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| Name: | gaby |
| Comments: | hi every1,..as i read the comments you all left on this space; i get sad cuz we all share something in common, i lost my lil angel too. He's name is Aiden He was 4 mo and 1/2,..like you all know it was terrible for me. Im 22 yrs old and my baby passed last year God took him to be with him and with you all's lilttle stars in Heaven. We sertantly cant question God from thhaking our kids back to heaven but we sure can Thank cuz they all in paradaise and for the opportunity the LOrd offers to see those little angels again. God bless all of you. gabriela guillen |
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| Name: | Shylese Tiera |
| Homepage URL: | http://dickitydoo@atlanticbb.net |
| Comments: | I was born on 2/18/2008 at 9:30 am in Morgantown, WV with a left-sided CDH. I have a very large defect in my diagraphm which has enabled my stomach, small intestines, bowel and possibly something else into my chest. I came out of my mommy blue and I was immediately placed on a ventilator. This did not help much because I have lung hypoplasia and I had to be sent to Pittsburgh. The doctors say I have a 50/50 chance of survival but, surgery is not even an option. They keep me well sedated with Morphine and I have to take lacix, heparin, and an antibiotic continuously. My heart rate keeps going way up because any stimulus at all makes me nervous so they had to put blinders on my eyes and ear plugs in my ears. I also have to be suctioned quite frequently. I know I'm alot of work but with all the prayers and my family's love I just want to go home with my mommy. Please help me. Thank You Shylese |
| Name: | Lynn TiDY |
| Comments: | I LOST MY SON ON THE 17TH jULY 2007 AT 13HOURS OLD HE WAS THE MOST BEAUTIFULL THING THAT CAME IN TO MY LIFE THAT GOD CALLED HIM STRAIGHT BACK TO BE AN ANGEL AS HE WAS TO GOOD FOR THIS EARTH SOME PEOPLE DREAM OF ANGELS I HELD ONE IN MY ARMS AND IT WAS THE MOST TREASURED TIME IN MY LIFE LOVE YOU LITTLE ONE LOVE MUM AND DAD |
| Name: | Lacey Apple |
| Comments: | We lost our daughter to CDH in April, she was 26 1/2 hours old. She was the most beautiful baby i have ever seen! |
| Name: | Vickie B |
| Comments: | My prayers are with my grandson, Christan, who is due in October and has been diagnosed with right CDH. |
| Name: | Susana Rosende |
| Homepage URL: | http://www.myspace.com/seanmatthewlutz |
| Comments: | Happy 19th Birthday to my son, Sean Matthew Lutz, in Heaven.
We love you and miss you always. Mom |
| Name: | Christopher |
| Comments: | I was born with CDH, hayfever, asthma and heart murmer and I am now 13 i treasure life as a gift and i thank the lord for my survival. |
| Name: | sonia stuart |
| Comments: | Hi my daughter was born on 6th Oct 2000 with undiagnosed left CDH. She is now 6 and still has on-going bowel probs mainly chronic constipation. She had to have a furthur 2 surgeries for adhesions and also bowel opsy for hirschsprungs (neg). It's been a real rough road for these survivors of CDH and my heart goes out to all who have lost their cherubs. I live in New Zealand and would love to make contact with other survivors. duncson@paradise.net.nz |
| Name: | Pat Benson |
| Homepage URL: | http://jerry_benson@sbcglobal.net |
| Comments: | My son Joshua is 10 years old and was born with Left CDH, he was on ECHMO for 19 days and is now a healthy happy 5th grader. We were told by doctors that he would never play sports and run like other children, well, thank God they were wrong and he is the light of our lives. Except for the scars on his chest and neck, you would never guess all that he went through. His first few years were very hard, pneumonia, asthma, too many ER visits to mention.... but as he got older, the visits were less frequent and he became healthier. He has a loving spirit and also a fiesty one as evidenced by the feuds with his sister. We are truly blessed. |
| Name: | Diane Stewart |
| Comments: | Hi, I am very confused, as I am 39 years old and have just been diagnosed with DIAPHRAGMATIC HERNIA. My Mom says my birth was normal and I had no problems as a child. In my early 20's I developed asthma.
For the past year and half I have had off and on extreme pain where the hernia is. I also went to the hospital before that for chest pain. I had an irregular ekg and a shadow showed up on chest x-ray. I have a history of gerd and ulcers. I recently had an abdominal CT scan which diagnosed the diaphragmatic hernia. I have been having severe breathing problems for months and it's going down hill. I'm being sent to a surgeon. I'm so confused because if this is congenital why didn't I have problems when I was born? ~Diane |
| Name: | mallary |
| Name: | Roxana |
| Homepage URL: | http://rsanchez0929@yahoo.com |
| Comments: | Dear Stacy,
I want to tell you that you and your baby are in my prayers, I hope that your baby gets strong every day. GOD BLESS YOU AND YOUR FAMILY TOO. |
| Name: | Marisa |
| Homepage URL: | http:// Bettybopgw35@aol.com |
| Comments: | Dearest Stacy,
I wanted to say that you and baby tyler are always in my prayers. Everynight I pray for baby tyler to get better, and he does. I know that God will always be by his side. He will always have his Guarding angel by his side telling him to be strong, and you will get ovr this soon.I want to see baby tyler get better. He's a strong baby. Once he starts breathing on his own things will pass by quick, and baby tyler will be better. I will always pray for baby tyler, telling God to let baby tyler out of his hands and let him grow up to be a teriffic little baby that we want him to be. I love you and baby tyler sooooooo much love Marisa |
| Name: | Gena & Derrick |
| Homepage URL: | http://Bettyboopgw35@a0l.com |
| Comments: | Dearest Stacey,
Just want to let you know that me and Derrick are thinking about you and Tyler night and day. You both are in our prayers. Stay strong Stacey as you already are honey. We love you both dearly. GUARDIAN ANGEL PRAYER FOR OUR LITTLE TYLER ANGEL OF GOD MY GUARDIAN DEAR TO WHOM GOD'S LOVE COMMITS ME HERE EVER THIS DAY BE AT MY SIDE TO LIGHT AND GUARD TO RULE AND GUIDE |
| Name: | Erin C. |
| Comments: | This is interesting,,,,today I decided to search the web to find out about CDH,,,,I will be 25 one week today,,,and I was born with CDH. Due to the care and diligence of certain doctors and nurses, I will be able to celebrate my 25th birthday,,,a milestone I honestly didn't think I'd be able to see. Until researching today, I never really understood CDH, but now I'm starting to. For all those mothers and fathers who have children born with CDH, or any mothers out there carrying a child with CDH,,,there is hope,,,don't you forget that. I thank the lord everyday for giving me the gift of life,,and though sometimes I do things I may regret in my future, I wouldn't give my life up for anything,,,not even CDH. |
| Name: | auntie kathy |
| Homepage URL: | http://katpat59@yahoo.com |
| Comments: | stacy,
I too believe you are stronger then you think. Just remember how many people love you and are praying for you and your baby boy.Your whole family is here for you,let us know what we can do.You are in my prays every nite. love auntie kathy |
| Name: | Auntie Tonia |
| Comments: | Stacy,
You are stronger than you think and I know you can do this. Here is a prayer for you. May today there be peace within you. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God.. let His presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of use. God brought you to this and he will bring you throught this. |
| Name: | Nina |
| Comments: | You and your family are in my prayers. |
| Name: | Great Aunt Sandy & Great Uncle Doug Danielson to Stacy Czarnecki |
| Homepage URL: | http://SLD352@AOL.COM |
| Comments: | Stacy, After seeing you this past week in Raleigh N.C., Uncle Doug and I are so proud of you the way you take care of Trista, the love you show her and yet the pain of carrying another child with CDH has shown us the type of strength you have. We really do believe in our hearts that our Great Nephew will survive this. You will have a long haul, but with all the prayers being said for you, God will answer them! You have given us both a new perspective on life and just how fragile it really is. You are a very strong woman, and, we will ALL be here for you at any hour of the day or night. All of our Rosaries and Novena's are for the both of you. Here is the daily prayer that we added to our special prayers each day. And, for anyone who reads this, please include Stacy in your prayers.
========================================================== Prayer to Health of Expectant Mother(s) ========================================================== Glorious St. Anthony, you were blessed to hold the Infant Jesus in your arms. I come to you now on behalf of Stacy Czarnecki, who pleads for the health and safety of her child that God has graced her to conceive. St. Anthony, guard this life God has created, and the mother God has chosen for this child. Let your gentle hand, like that of a skilled physician, aid in her delivery so that this baby will know good health and lasting happiness. May her child be favored with the grace of holy baptism, and grow to love our Lord Jesus Christ above all else in this world. Amen. =========================================================== We love you honey. Stay strong and know that God will take care of everything. Aunt Sandy & Uncle Doug Raleigh, North Carolina |
| Name: | maria czarnecki |
| Homepage URL: | http://casinonana 57@yahoo.com |
| Comments: | On Jan 3,2002 by granddaughter Ayllsia was born with CDH.She passed away Feb 2,2002.My daughter is now expecting in Aug and this baby also has CDH. Nov of 2000 she delieverd my first grandson Christopher who was still born at 7 months and now the doctors think that he also had CDH.God did give her a heathly little girl who is going to be 3 years old this month.Its very hard to believe that 2 of her babies (possible 3) having CDH. Please pray for her that this baby she is carrying will survie. Our prayers are with all of you. Thank you |
| Name: | maria czarnecki |
| Comments: | Five years ago I lost my granddaugher. She had CDH and lived for 29days.Now my daughter is having another baby and he also has CDH.This is her third child with CDH. She does have a healthy little girl that is now 3 years old. She was born healthy. I can't believe three times for her with babies that are CDH.Hopefully this baby will make it. I just couldn't bear her losing three babies. Please pray for us. Thank you |
| Name: | Stacy Czarnecki |
| Comments: | On Jan 4 2002 I gave birth to my daughter alyssa. I found out when I was 6 months pregnant she had cdh. It broke my heart. I thought things were going to be ok. The doctors tried to do everything possible. I get a page one morning. I needed to make a dession.I needed to do the best thing for her. Alyssa passed away on Feb 3 2002..
On May 30 2003 i gave birth to a healthy baby girl Trista. Nothing was wrong with her. Shes a happy 3 year old. On April 26 2006 i found out i was having a little boy. Unfortunally he has cdh..I dont know how to react to this. I went through this once I didnt think I'd have to do it again. The doctors said that it was very rare to have this twice.I am do on Aug 27 2006. I pray that things are going to be ok with him. I will never give up hope. |
| Name: | Stacy Czarnecki |
| Comments: | On Jan 4 2002 I gave birth to my daughter alyssa. I found out when I was 6 months pregnant she had cdh. It broke my heart. I thought things were going to be ok. The doctors tried to do everything possible. I get a page one morning. I needed to make a dession.I needed to do the best thing for her. Alyssa passed away on Feb 3 2002..
On May 30 2003 i gave birth to a healthy baby girl Trista. Nothing was wrong with her. Shes a happy 3 year old. On April 26 2006 i found out i was having a little boy. Unfortunally he has cdh..I dont know how to react to this. I went through this once I didnt think I'd have to do it again. The doctors said that it was very rare to have this twice.I am do on Aug 27 2006. I pray that things are going to be ok with him. I will never give up hope. |
| Name: | Jennifer White |
| Comments: | On May 16, 2005 my husband and I gave birth to our second daughter whom was born with CDH. We had no clue what was going on or anything about the condition. Our daughter Chastity was given only a 10% chance of living. We did everything in our power and the doctors powers to give her the best life possible. On November 11, 2005 we had to make the choice to let her pass on peacefuly after months of sugeries, infections, and test. We made the best choice of our daughter.
We love our little Cherub Chastity Billy and Jennifer White |
| Name: | mike c.w.j. |
| Comments: | i really apreciate you having this web site it helps my wife and i with our child we are expecting with cdh |
| Name: | Rena O. Stroud |
| Homepage URL: | http://meme38-2000@hotmail.com |
| Comments: | My grandaughter is a cherub, born 12/27/02. She just turned three and is a blessing to us all. Thank you for this website, it helped our family just knowing we were not alone. |
| Name: | Carly Cribben |
| Comments: | I am proud to say I am a Cherub! Your newsletters, Christmas cards and the other wonderful things you send have all helped my mum and me so much, its great to know there are other special Cherubs out there, its like we're all one big family! I'm now 24, working as an Entertainments manager & dancer, and am proof that us Cherubs can live a normal and happy life after all we've been through! |
| Name: | Celeste |
| Homepage URL: | http://celestevanrensburg@hotmail.com |
| Comments: | My son Darius was born October 28th 1985. I was a very young mother at the time 19 when i was rushed into hospital for a c-section, during my pregnancy there never was a concern raised everything seemed perfect. I was woken by doctors at 4 am in the morning, Darius was born at 7 pm the previous evening, they informed me that Darius has been in surgery for 7 hours and they did not believe he would survive until the morning, they asked whether i would like to visit him in ICU. What a shock it was to see my little baby boy covered in tubes and huges scars the fear of him dying was unbearable, they also informed me that if he managed to pull through he would be severly brain damaged due the lack of oxygen get to the brain, he had what I now realise CDH on the left side of his chest, his lungs and heart was severly damaged, all his intestines were squashed through the hernia and place on the lungs and heart. Needless to say Darius surived through the night and day and night and day, he is now 20 years old. He had to have another major operation 2 weeks after birth to correct an obstruction in his stomach, again this was a real shock afer having spent the first 2 weeks by his side seeing the small steps of progress being made, his second operation lasted 5 hours, but hey my fighter survived, he then had 3 more major operations througout his life, and even now at 20 he has some serious problems, adhesions that have formed to the chest cavity and these have also stretched as far as the left lung. We were adviced not to have any surgery carried out because of the area (heart and lungs) they would have to work in, they cannot guarantee a full recovery and have therefore told us to try and keep him fit and active until such time things really need to be rectified, they would prefer this to be done after he is fully grown. Life has been stressfull and the worries and concerns as a mother has been at times too much to carry, but I look at him today, I see the scars and I realise how lucky I am to have this wonderful son by my side. I thank the male nurse who was present during the c-section for noticing that there was something wrong with my son when he was, he realised his breathing was not normal and informed the GP who in turn elected to have a heart surgeon and pediatrician called in immediately, they all worked so hard to save Darius.......I thank God for giving us the strength to continue believing that everything will work out fine. I dont think Darius realizes the severity of the problems he had and still has, he lives his life to the full and enjoys extreme sports and has a enthusiasm for experiencing new things on a daily basis. To all those parents who have lost their babies through CDH, my thoughts are with you and for all those parents going through the anxiety of discovering their baby was or is going to be born with CDH my thought are with you.
Celeste |
| Name: | roberta jackson |
| Homepage URL: | http://robertajackson1066@sbcglobal.net |
| Comments: | I am very sorry about myletter being on here four times if you can delete three that would be great. My cand my kids kept making me re-do it. Again sorry. MORGAN's MOMMY |
| Name: | Roberta |
| Homepage URL: | http://robertajackson1066@sbcglobal.net |
| Comments: | My daughter Morgan Marie Jackson was born Feb 3, 1998 at Childrens Hospital Detroit, Michigan. She fought until March 20th 1998 when she left to be free of pain in Heaven. She was so brave and strong. She is my little HERO she went through more then most of us will ever face in our life. Love mommy 8/25/05 |
| Name: | Roberta |
| Homepage URL: | http://robertajackson1066@sbcglobal.net |
| Comments: | My Daughter Morgan Marie Jackson was born Feb 3, 1998 at Childrens Hospital of Detroit Michigan with CDH. She left to be free March 20, 1998. She is my little HERO, she went through more then most of us will ever go through. I LOVE YOU and MISS YOU SUGAR.
Love your ~MOMMY~ |
| Name: | Roberta |
| Homepage URL: | http://robertajackson1066@sbcglobal.net |
| Comments: | My Daughter Morgan Marie Jackson was born Feb 3, 1998 at Childrens Hospital of Detroit Michigan with CDH. She left to be free March 20, 1998. She is my little HERO, she went through more then most of us will ever go through. I LOVE YOU and MISS YOU SUGAR.
Love your ~MOMMY~ |
| Name: | Roberta |
| Homepage URL: | http://robertajackson1066@sbcglobal.net |
| Comments: | My daughter Morgan Marie Jackson was born Feb 3, 1998 at Childrens Hospital Detroit, Michigan. She fought until March 20th 1998 when she left to be free of pain in Heaven. She was so brave and strong. She is my little HERO she went through more then most of us will ever face in our life. |
| Name: | Susana Rosende: In Memory of Sean |
| Homepage URL: | http://www.geocities.com/suemrose61/Memory.htm |
| Comments: | My second son, Sean Matthew Lutz, was born on April 29th, 1988 in New Brunswick, NJ. It had been a good pregnancy and delivery (my first son, Brian, born 18 months prior had been a breech birth and C-section). I was young (27) then, and healthy, and had a healthy toddler. I was completely shocked when I learned of Sean's condition.
I didn't even know Sean had CDH until they cut the cord and he couldn't breathe. After surviving surgery, he was flown to the only hospital in the tri-state area that had a Lung Bypass Machine...Pittsburgh Children's Hospital. He died during the flight, on April 30th, 1988. Five years later, I had a healthy boy again, although Joey was diagnosed with Chronic Asthma at six years old. In the early 90s, I scoured the Internet for information on CDH. This site was my resource, sounding board, healer, and sanity. I am forever grateful for Dawn Torrence and her selfless volunteers. I will always miss Sean and I pray for all the grieving families and survivors. There is no greater loss than that of a child. My fervent hope is that some day research will find a cure so no other family will have to suffer this loss. Susana Maria Rosende www.writewaydesigns.com |
| Name: | sam mulder |
| Homepage URL: | http://samantha/mulder@sbcglobal.net |
| Comments: | what a wonderful resource this is! i am a midwife, and was a labor/birth nurse before that. on behalf of all those people with CDH in their lives, families, survivors and those grieving, i'd like to thank you for your work here. what a gift to struggling people.
also, please pray for a cherub i know--his name is caleb oliver. he is due in may 05 (23 weeks now). caleb has many other anomalies, and his future is uncertain. pray for JD and allison and big sister eliza as they begin the journey so many of you understand. blessings to all who visit here. sam |
| Name: | KELLY HOSKING |
| Comments: | MY SECOND SON WAS BORN WITH CDH, I WENT ALL THE WAY THROUGH MY PREGNANCY NOT KNOWING ANY THING, AT 29 WEEKS I LOOKED LIKE I WAS READY TO GIVE BIRTH, I CARRYED ALOT OF WATER FROM THEN I HAD TO HAVE HOSPITAL CHECKS EVERY WEEK, FROM 32 WEEKS OF PREGNANACY MY WATERS HAD GONE UP ALOT I WAS HAVING BLOOD AND A SCAN EVERY WEEK AS IT GOT WORSE AT 36 WEEKS MY MIDWIFE SAID MY STOMACH WAS BIGGER THAN WOMEN WHO WERE HAVING TRIPLETS I KEPT HAVING MY SCANS AND BLOOD AND THEY KEPT TELLING ME EVERYTHING WAS OK THE THE CORD WAS NOT FAR FROM THE BABYS HEAD AND NO-ONE COULD UNDERSTAND HOW MUCH WATER I HAD AND WHY THEY DIDNT BREAK, THEY TOLD ME THAT IF THEY WERE TO GO AT ANY TIME THAT I WAS TO DROP TO THE FLOOR ON ALL HANDS AND KNEES I WENT TO 40 WEEKS AND THOUGHT IT WOULD BE ALL OVER MY MID WIFE HAD BEEN TRYING TO GET THE HOSPITAL TO GIVE ME A C-SECTION FROM 37 WEEKS CAUSE OF THE SIZE ON ME MY UTERUS HAD FILLED WITH WATER FROM THE INSIDE AND HAD DROPED UNDER MY BELLY ABOUT 15 CMS OR MORE WITH BIG BLISTERS BUT THE HOSPIAL JUST SAID WAIT TILL THE BABY WAS READY TO COME FINALLY THEY GAVE ME A DAY TO GO IN AND HAVE THE C-SECTION 5 DAYS LATER (25 JULY 2003) 5 DAYS AFTER MY 20th BIRTHDAY, I HAD A C-SECTION ON MY FIRST SON JOSHUA AND I WAS JUST LOOKING FORWARD TO SEEING THE BABY, ON THE 23 MY LABOUR STARTED SLOW THEY SENT ME HOME AND TOLD ME WHEN THE PAY STARTS MORE FREQUENT OR MY WATERS GO COME STRAIGHT BACK, ON THE MORNING OF MY C-SECTION I DIDNT GET MUCH SLEEP HAPPY AND SAD EMOTIONAL AND CRYING THE PAIN CAME ON I GOT TO THE HOSPITAL GETTING READY FOR THE SECTION WHEN MY WATERS WENT THE PAIN WAS GETTING WORSE, THEY KNOCKED ME OUT STRAIGHT AWAY WHEN THEY BROUGHT ME ROUND I WAS EXPECTING MY HUSBAND TO BE THERE WITH OUR NEW SON AS WE TALKED ABOUT BUT INSTEAD THERE WAS SO MANY PEOPLE AROUND MY BED TRYING TO EXPLAIN TO ME BUT I DIDNT UNDERSTAND A WORD THEY SAID. YOUR BABY HAS GOT A SERIOUS PROBLEM CALLED DIAPHRAGMATIC HERNIA AND HE HAS TO GO TO CARDIFF HOSPIAL TO UNDER GO AND OPERATION STRAIGHT AWAY, I JUST LOOKED AT THEM AND THOUGHT AFTER EVERYTHING WE WENT THROUGH WITH THE PREGNANCY YOU TOLD ME EVERYTHING WAS OK, I ASKED TO SEE HIM BUT THEY SAID NO AS THEY WERE FINDING IT HARD TO KEEP HIM ALIVE AS THERE WAS NO ICU THERE (INTENSIVE CARE UNIT)I DIDNT KNOW WHAT TO FEEL THE NEXT NIGHT I GOT SIGNED OVER TO CARDIFF HOSPITAL I MEET MY HUSBAND THERE AND COULD NOT WAIT TO SEE MY BABY AND WHEN I SAW HIM I COULD NOT STOP CRYING THE MACHINES WERE BREATHING FOR HIM THEY DIDNT KNOW WHAT HIS CHANCES WAS WE ALSO HAD ANOTHER SON WHO WAS WAITING TO SEE HIS BROTHER AND MAMMY JOSHUA TALKED IN HIS OWN LITTLE WORDS TO KURT AS JOSHUA WAS NEARLY 2 THREE MONTHS LATER. KURT HAD THE OPERATION AND CAME ON REALLY WELL HE HAS IS REGULAR CHECK-UPS THE ONLY PROBLEM HE HAS NOW IS WHEN HE GETS A BAD CHEST HE FINDS IT HARD TO BREATH AS WHEN HE WAS GROWING DURING THE PREGNANCY ONLY ONE LUNG DEVELOPED BUT OTHER WISE NOT MANY PROBLEMS. KURT WAS VERY SLOW IN DEVELOPING AT 11 MONTHS HE STARTED TO SIT UP AT 13 MONTHS HE STARTED CRAWLING AND AT 16 MONTHS HE STARTED WALKING HE DONT SPEAK YET BUT AS LONG AS WE HAVE HIM BY OUR SIDES AND HES HEALTHY WE DONT MIND HOW LONG IT TAKES HIM TO DEVELOPE. ALL I HAVE TO SAY TO THE MUMS AND DADS OUT THERE IS BE BRAVE, BE STRONG I HOPE EVERYTHING TURNS OUT TO BE A HAPPY ENDING LIKE MINE KEEP YOUR FAITH |
| Name: | KELLY HOSKING |
| Comments: | MY SECOND SON WAS BORN WITH CDH, I WENT ALL THE WAY THROUGH MY PREGNANCY NOT KNOWING ANY THING, AT 29 WEEKS I LOOKED LIKE I WAS READY TO GIVE BIRTH, I CARRYED ALOT OF WATER FROM THEN I HAD TO HAVE HOSPITAL CHECKS EVERY WEEK, FROM 32 WEEKS OF PREGNANACY MY WATERS HAD GONE UP ALOT I WAS HAVING BLOOD AND A SCAN EVERY WEEK AS IT GOT WORSE AT 36 WEEKS MY MIDWIFE SAID MY STOMACH WAS BIGGER THAN WOMEN WHO WERE HAVING TRIPLETS I KEPT HAVING MY SCANS AND BLOOD AND THEY KEPT TELLING ME EVERYTHING WAS OK THE THE CORD WAS NOT FAR FROM THE BABYS HEAD AND NO-ONE COULD UNDERSTAND HOW MUCH WATER I HAD AND WHY THEY DIDNT BREAK, THEY TOLD ME THAT IF THEY WERE TO GO AT ANY TIME THAT I WAS TO DROP TO THE FLOOR ON ALL HANDS AND KNEES I WENT TO 40 WEEKS AND THOUGHT IT WOULD BE ALL OVER MY MID WIFE HAD BEEN TRYING TO GET THE HOSPITAL TO GIVE ME A C-SECTION FROM 37 WEEKS CAUSE OF THE SIZE ON ME MY UTERUS HAD FILLED WITH WATER FROM THE INSIDE AND HAD DROPED UNDER MY BELLY ABOUT 15 CMS OR MORE WITH BIG BLISTERS BUT THE HOSPIAL JUST SAID WAIT TILL THE BABY WAS READY TO COME FINALLY THEY GAVE ME A DAY TO GO IN AND HAVE THE C-SECTION 5 DAYS LATER (25 JULY 2003) 5 DAYS AFTER MY 20th BIRTHDAY, I HAD A C-SECTION ON MY FIRST SON JOSHUA AND I WAS JUST LOOKING FORWARD TO SEEING THE BABY, ON THE 23 MY LABOUR STARTED SLOW THEY SENT ME HOME AND TOLD ME WHEN THE PAY STARTS MORE FREQUENT OR MY WATERS GO COME STRAIGHT BACK, ON THE MORNING OF MY C-SECTION I DIDNT GET MUCH SLEEP HAPPY AND SAD EMOTIONAL AND CRYING THE PAIN CAME ON I GOT TO THE HOSPITAL GETTING READY FOR THE SECTION WHEN MY WATERS WENT THE PAIN WAS GETTING WORSE, THEY KNOCKED ME OUT STRAIGHT AWAY WHEN THEY BROUGHT ME ROUND I WAS EXPECTING MY HUSBAND TO BE THERE WITH OUR NEW SON AS WE TALKED ABOUT BUT INSTEAD THERE WAS SO MANY PEOPLE AROUND MY BED TRYING TO EXPLAIN TO ME BUT I DIDNT UNDERSTAND A WORD THEY SAID. YOUR BABY HAS GOT A SERIOUS PROBLEM CALLED DIAPHRAGMATIC HERNIA AND HE HAS TO GO TO CARDIFF HOSPIAL TO UNDER GO AND OPERATION STRAIGHT AWAY, I JUST LOOKED AT THEM AND THOUGHT AFTER EVERYTHING WE WENT THROUGH WITH THE PREGNANCY YOU TOLD ME EVERYTHING WAS OK, I ASKED TO SEE HIM BUT THEY SAID NO AS THEY WERE FINDING IT HARD TO KEEP HIM ALIVE AS THERE WAS NO ICU THERE (INTENSIVE CARE UNIT)I DIDNT KNOW WHAT TO FEEL THE NEXT NIGHT I GOT SIGNED OVER TO CARDIFF HOSPITAL I MEET MY HUSBAND THERE AND COULD NOT WAIT TO SEE MY BABY AND WHEN I SAW HIM I COULD NOT STOP CRYING THE MACHINES WERE BREATHING FOR HIM THEY DIDNT KNOW WHAT HIS CHANCES WAS WE ALSO HAD ANOTHER SON WHO WAS WAITING TO SEE HIS BROTHER AND MAMMY JOSHUA TALKED IN HIS OWN LITTLE WORDS TO KURT AS JOSHUA WAS NEARLY 2 THREE MONTHS LATER. KURT HAD THE OPERATION AND CAME ON REALLY WELL HE HAS IS REGULAR CHECK-UPS THE ONLY PROBLEM HE HAS NOW IS WHEN HE GETS A BAD CHEST HE FINDS IT HARD TO BREATH AS WHEN HE WAS GROWING DURING THE PREGNANCY ONLY ONE LUNG DEVELOPED BUT OTHER WISE NOT MANY PROBLEMS. KURT WAS VERY SLOW IN DEVELOPING AT 11 MONTHS HE STARTED TO SIT UP AT 13 MONTHS HE STARTED CRAWLING AND AT 16 MONTHS HE STARTED WALKING HE DONT SPEAK YET BUT AS LONG AS WE HAVE HIM BY OUR SIDES AND HES HEALTHY WE DONT MIND HOW LONG IT TAKES HIM TO DEVELOPE. ALL I HAVE TO SAY TO THE MUMS AND DADS OUT THERE IS BE BRAVE, BE STRONG I HOPE EVERYTHING TURNS OUT TO BE A HAPPY ENDING LIKE MINE KEEP YOUR FAITH |
| Name: | Joy (DeVries) Hooper |
| Homepage URL: | http://joya.hooper@att.net |
| Comments: | I was born in 1955 with a diaphragmatic hernia. Until a fews days ago when I accidently found this site searching for something else, I had no idea that CDH occured so frequently and that babies still die from it. I have never met or heard of anyone having CDH except a newspaper article about 15 years ago when the 1st operation was done on a fetus.
I wept as I read some of the stories, and I felt so fortunate that I am alive. I was told that I was a miracle baby(hence the name Joy) and finally after 49 years, I believe it! I will keep you all in my prayers. |
| Name: | Sandra Kennell |
| Comments: | My son was diagnosed with left side CDH at 20wks gestation, i was told it was quite severe & was advised to terminate which i refused to do as my child was kicking & moving at that time, i developed polyhydramnious & was kept in hospital for 7wks before he was delivered by c/section on 20 nov 1997, they cut the cord but he remained quiet, he was put on a breathing machine until his organs started to shut down one by one & we had to turn the machine off, it was heartbreaking to wait for the last beat of his heart, 11mths later i gave birth to a stillborn boy through totally different reasons, the cord was round his neck 3 times, as you can imagine the grief overwhelmed me & my family, i went on to have a healthy boy followed by a healthy girl to go with my 11yr old son i already had, so there is a light at the end of the tunnel, id dearly love more children but i dont think my mind can take anymore torture of pregnancy so im training to be a midwife instead!!! This is such an amazing site, im so glad i found it. Prayers go out to everyone in need of them. |
| Name: | Sandra Kennell |
| Comments: | What a wonderful site, until i found this page id never met anyone who heard of Diaphragmatic Hernia, then to find it is a known condition i felt a kind of comfort from that, thank you again to all your other members & organisers. |
| Name: | Julie Yammarino |
| Homepage URL: | http://j.yammarino@comcast.net |
| Comments: | Our son was diagnosed with left sided CDH at 18 weeks gestation. He had no other anomalies or defects. He died without explanation in utero at 37 weeks. We delivered him stillborn on June 7, 2004. His name is Bryce and he was beautiful. I am looking for any information about CDH and stillbirths. There is only a 5% occurence of stillbirth and 95% of that small group have multiple defects or syndromes. I am baffled.
Cherubs was a huge source of support and information for us throughout this journey. Thank you and may God bless any family going through this. |
| Name: | angela donaldson |
| Homepage URL: | http://tigger_d3@hotmail.com |
| Comments: | hi all,
i think cherubs is a wonderful site very helping and re-asuring,my daughter chloe was born with this condition and is now 13 months old. she has been through the wars a bit staying in hospital all the time for feeding problems,tummy bug's,chest infections has also had 2 operations 1 for the hernia repair and 1 for a gastrostomy mickey button for her feeding as i said she is 13 months old and only 14 pound 10 and a half oz so anyone out there worrying about the feeding problemsi realy wouldnt worry too much a mothers instinct is better then any doctors judgement. take car all thany-you for taking your time to read this |
| Name: | vicky |
| Comments: | i am 23 weeks pregnant and found out my baby had left CDH, i am very scared of what is going to happen to my little boy i read emails from people saying there baby survived from it but i also seem alot of emails saying their babies died from it, i am from the uk and people who are thinking of correcting the CDH while you still are carrying your baby please do not because it is a risk to you and your child they dont know if it propally works at the moment they are just using people as guinie pigs believe me i have been told all this from all the doctors at my hospital here in the uk cos they sent people from the uk to america to get that surgery and some mothers and their babies died some mothers just lost their baby they asntr been one good result from that operation yet so if i was you i wouldnt get it done and just wait till your baby is born and pray he/she will be ok and live a happy life like i am doing i have a gut feeling my baby will survive through all this and plus i am only 17 so the chances of my baby having chromsonal abnormalitys are very slim so really i just got to wait and pray that my baby will get through and make it to surgery to correct his CDH |
| Name: | Rebecca Stewart |
| Homepage URL: | http://crazespydr@yahoo.com |
| Comments: | Faith is the only cure |
| Name: | Bill and Denise Touhill |
| Homepage URL: | http://swtkat2@aol.com |
| Comments: | God bless all who have and will deal with CDH. Our son Shawn was born with this 8 yrs ago 6/5/95, the hole was the size of a half dollar. He was not diagnosed until 22 hrs after birth when it hit the fan. His Spleen plugged the hole temporarily.
A nurse noticed irregular breathing and the Doctor orderer a chest series of x-rays and this was caught. Told Literally a Miracle. He is now 8 yrs old, 3rd grade, healthy, a 1st degree blackbelt in Takewondo, excellent grades "A" student, plays electric guitar, good in baseball. Thank you for letting us share this and to all who read this take comfort. God Bless all CDH Families dealing with this. |
| Name: | MIKE SOMA |
| Homepage URL: | http://www.best-prescription-drugs.com |
| Comments: | http://www.best-prescription-drugs.com soma |
| Name: | Dan |
| Homepage URL: | http://www.pedee.com |
| Comments: | Nice site |
| Name: | sandra Dicesare |
| Homepage URL: | http:// t2@YAHOO.COM |
| Comments: | AT 18 WEEKS IN UTERO,WE FOUND OUT OUR SON HAD LEFT SIDED CDH.IT WAS OUR WOST NIGHTMARE!!! ANTHONY WAS BORN ON 9-11-02. HE WAS IN THE NICU FOR 2 MONTHS - HE SURVIVED AND IS AN AMAZING 16 MONTH OLD ,HE HAS MANY FEEDING PROBLEMS AND WE JUST FOUND OUT HIS CDH REHERNIATED ,THE PATCH DID NOT WORK,HE GOES IN FOR HIS SECOND REPAIR IN A FEW WEEKS, PLEASE PRAY FOR HIM !!! MY HEART GOES OUT TO ALL CDH FAMILIES WHOSE CHERUBS SURVIVED AND TO THOSE FAMILIES WHOSE CHERUBS DID NOT MAKE IT!!!! WE HAVE TO KEEP THIS SITE UP AND RUNNING IT IS A WONDERFUL THING!!!! GOD BLESS YOU ALL AND PLEASE PRAY FOR MY LITTLE ANTHONY!!!!! |
| Name: | sandra Dicesare |
| Homepage URL: | http:// t2@YAHOO.COM |
| Comments: | AT 18 WEEKS IN UTERO,WE FOUND OUT OUR SON HAD LEFT SIDED CDH.IT WAS OUR WOST NIGHTMARE!!! ANTHONY WAS BORN ON 9-11-02. HE WAS IN THE NICU FOR 2 MONTHS - HE SURVIVED AND IS AN AMAZING 16 MONTH OLD ,HE HAS MANY FEEDING PROBLEMS AND WE JUST FOUND OUT HIS CDH REHERNIATED ,THE PATCH DID NOT WORK,HE GOES IN FOR HIS SECOND REPAIR IN A FEW WEEKS, PLEASE PRAY FOR HIM !!! MY HEART GOES OUT TO ALL CDH FAMILIES WHOSE CHERUBS SURVIVED AND TO THOSE FAMILIES WHOSE CHERUBS DID NOT MAKE IT!!!! WE HAVE TO KEEP THIS SITE UP AND RUNNING IT IS A WONDERFUL THING!!!! GOD BLESS YOU ALL AND PLEASE PRAY FOR MY LITTLE ANTHONY!!!!! |
| Name: | Erica Niemi |
| Homepage URL: | http://Eerca05@yahoo.com |
| Comments: | I gave birth to a beautiful baby girl on October 14,2003. She was diagnosed with CDH @ 25 weeks. Immediately after birth they took her and placed her on ECMO and there she stayed for 5 weeks. There were many setbacks through her course to come off of ECMO, but she did it and is doing great! She has defintitely shocked a lot of people with her miraculous recovery. And to our surprise she will hopefully be discharged next week. On January 6th. All the doctors and nurses say you would never know she was so sick! She's a star in the NICU. And I wouldn't have it any other way!!! She is my world, heart and soul. I admire her spunk and her spirit. And my faith in God has never been greater. |
| Name: | Doug Wallick |
| Homepage URL: | http://pages.ivillage.com/lisawj/jacobsjourney |
| Comments: | Hello, My son Jacob was born on 6-6-03 with a large left sided CDH. We knew since march from the ultra sound. He just turned 6 month's old & is doing great. This site has been a great help. I stayed up many night's reading the stories & shedding many tears & smiles. Doug in Minneapolis. |
| Name: | Maureen |
| Homepage URL: | http://marti127@lycos.com |
| Comments: | My son will be 1 on 12/27/03 and you website helps me realize how lucky we are to have him with us. My heart goes out to all of those who have lost their precious cherubs. May God bless you all. |
| Name: | marti |
| Comments: | There is also a web page on ECMO with other stories about children. Just search ECMO visitor and it should come up. |
| Name: | Natasha Lamb |
| Homepage URL: | http://natasha@natasha96.freeserve.co.uk |
| Comments: | I have just lost my little girl after 14hrs 4 weeks ago she had a left sided cdh.
I would like to hear from anyone who has lost there baby especially people who live in england uk. I miss her so much I could not be with her when she died as she was being moved to another hosp but she died before she reached there. We love you Carys Amber Email natasha@natasha96.freeserve.co.uk |
| Name: | Patience S |
| Comments: | My little grandson was born on June 11, 2003 at 8:39 and went to Heaven at 10:02 on the same day. We had no clue anything was wrong until they clipped him away from my daughter...then he started failing. He has CDH on the right side...there was no chance of servival. I spent alot of time holding and rocking him. He was beautiful...so so precious. Funeral will be this Wed and am praying we get thru this ok. Just had to let you all know.
PatienceS patiencesprague@yahoo.com |
| Name: | Annie Lavallée |
| Homepage URL: | http://annielavallee@hotmail.com |
| Comments: | Bonjour,
J'aimerais correspondre avec des gens qui ont un bébé né avec CDH et qui parlent le français. Merci. Ma Victoria a 17 mois (16 juin 2003) et elle est né avec une CHD gauche. Nous avons des problèmes avec son gain de poids. |
| Name: | lisa ernst |
| Homepage URL: | http://lmernst70@juno.com |
| Comments: | hi my son is turn three in june and he is doing well except for some thing that have come up in the past few months |
| Name: | Billy Ray Toledo |
| Homepage URL: | http://bennytoledo.cjb.net |
| Comments: | Mmm...I just love them cherubs. Go cherub, go! That's my motto, and that motto has kept me alive. Love, BRT |
| Name: | Tina |
| Comments: | Hi,I gave birth to a little boy on September 28, 2000 he was diagnosis with CDH. We were told that he had a zero chance to live, but he showed all of them. He is a happy healthy little gift from GOD. I just would like to tell anyone that is going or has gone through this to keep praying and don't never give up let your heart and GOD lead you in the right way for your child and yourself. |
| Name: | Julia |
| Comments: | I really appreciate this website. I found out at 20 weeks that my son had CDH. That is when I found Cherubs. I'm so glad that I was able to get so much information. Caleb was born November 25, 2002 and went to Heaven on December 25, 2002. Feel free to email me at JAyers1@sc.rr.com |
| Name: | Julia |
| Name: | Jennifer Andriacchi |
| Homepage URL: | http://iam.homewithgod.com/angeljeh/Jakob.html |
| Comments: | If only I had found this website earlier, then maybe my son would still be here. My 3 1/2 year old son,Jakob, was diagnosed with a right sided Morgagni hernia on April 1,2002 and passed away on April 18, 2002 due to respiratory failure after surgery. This site has some much information and so many resources, I can't thank you enough. |
| Name: | Libbie Miller |
| Comments: | It's been 3 years since we had our sweet little girl who is now dancing in heaven with the angels. HAPPY 3RD BIRTHDAY MEGAN RENE. You are loved and missed each and every day.
Love Mama Megan Rene Miller 12/13/99-12/15/99 |
| Name: | TONYA THOMAS |
| Comments: | HELLO, I WOULD LIKE TO ADD THAT I AM DELIGHTED TO FIND THIS WEBSITE. MY SON IS 8 YEARS OLD, HE WAS PREMATURE WEIGHING 4LBS AND 4OZS WHEN HE WAS BORN HE WAS ALSO BORN WITH A CDH. HE WAS PUT ON SEVERAL DIFFERENT VENTILATORS THEN FINALLY TO ECOMO. THE DOCTORS TOLD US THAT HE ONLY HAD A 10% CHANCE TO LIVE EVEN BEFORE HIS 1ST SURGERY. MY MIRACLE BABY PULLED THROUGH!! BUT HE KEPT REHERNIATING, THIS WENT ON 2 DIFFERENT TIMES AFTER HIS FIRST SURGERY. AFTER HIS 2ND SURGERY, THE DOCTORS CAME TO ME AND TOLD ME HIS CHANCES WERE SLIM THAT IT DID NOT LOOK GOOD. AND ASKED ME ABOUT TAKING HIM OFF OF LIFE SUPPORT. OF COURSE I WAS FRANTIC AND TOLD THEM THAT HE WAS FIGHTING AND THAT THEY SHOULD FIGHT FOR HIM ALSO. THAT'S ALL THEY NEEDED TO HEAR. FROM THEN ON THE NEVER ASKED ME THAT AGAIN. FINALLY ALL SURGERIES WERE COMPLETE AND THE 3RD DIAPHRAM THAT THEY PUT IN SEEMED TO BE HOLDING. IT TOOK US 4 MONTHS AND 3 DAYS TO COME HOME, BUT I WAS DETERMINED TO BRING MY MIRACLE BABY HOME WITH ME. IT HASN'T BEEN EASY SINCE THEN, HE HAD OXYGEN FOR 3 YEARS AND MONITORS AND PULSE OXIMETERES AND MANY HOSPITAL STAYS IN KOSAIRS CHILDRENS HOSPITAL. HE KEEPS THRIVING NOW, HE IS WONDERFUL AND GOD HAS LEFT HIM HERE FOR ME FOR A REASON. I WANT TO THANK GOD AND THE DOCTORS,SURGEONS AND NURSES AT KOSAIRS AND HIS PULMINARY DOCTOR, WITHOUT YOU ALL HE WOULD HAVE NEVER SURVIVED. MY DEEPEST GRATITUDE TO YOU ALL FOR SAVING MY BABY THAT ONLY HAD A 10% CHANCE TO LIVE. ANYONE CAN CONTACT ME AT tthomas@tartergate.com DURING THE DAY AND AT edwilson@duo-county.com DURING THE NIGHT. I AM THANKFUL THAT I HAVE FOUND CHERUBS.
THANK YOU, TONYA |
| Name: | Anna Toledo |
| Homepage URL: | http://www.boopmama.com |
| Comments: | I had a son on 7/14/00 with CDH. I found out at 12 weeks of pregnancy. He is now 2 years old and running around. When I look at him, I see a miracle because that's exactly what he is.
Continue the good work and giving the support to the parents of those who need you. |
| Name: | Anna Toledo |
| Homepage URL: | http://boopmama@aol.com |
| Comments: | Keep up the good work! I had a son named Brandon on 7/14/00 with CDH. If anyone ever needs any support, you're welcome to e-mail me. |
| Name: | Gloria |
| Comments: | My little girl, Jennifer, was born in 1979 with CDH. She only lived 4 hours after her birth. Today would have been her 23rd birthday! Happy Birthday to my little angel! She will never be forgotten. |
| Name: | Jolene |
| Comments: | Jennifer-
I got one email to go thru and got your reply. NOW, I can't get anything to you @ the address u listed. They are all bouncing back. PLEASE email me or something as I can't respond to you. TrentNSaydsMama@aol.com Jolene :-) |
| Name: | Jennifer Disabella |
| Homepage URL: | http://jdisabella01@snet.net |
| Comments: | Hi, I found out this week that my unborn baby has CDH. I am 18 weeks pregnant and this is my first child.My husband and I are waiting for the amnio results to come back before we can figure out what else we can do. If all is well we will hopefully have inutero surgery. Does anyone know what the % of survival is after inutero surgery? Please e-mail me if you do because I cant seem to find the info I need. Thanks Jennifer |
| Name: | Jennifer Disabella |
| Comments: | Hi, I found out this week that my unborn baby has CDH. I am 18 weeks pregnant and this is my first child.My husband and I are waiting for the amnio results to come back before we can figure out what else we can do. If all is well we will hopefully have inutero surgery. Does anyone know what the % of survival is after inutero surgery? Plaese e-mail me if you do because I cant seem to find the info I need. Thanks Jennifer |
| Name: | jane bell |
| Comments: | my daughter was born with cdh to her left side she was born january 7th 88 and she is now 14, she has a few problems breathing still but is fit and healthy it is nice to no that we are not alone. |
| Name: | Helena Fergusson |
| Comments: | I am 23 weeks pregnant and have just found out our baby has a left diaphramatic hernia. We have recieved our amnio results which are all good.We are still only being given a 40% chance of the little one surviving.Its now just a matter of waiting. I am wanting to find out if an operation can be done while I am still carrying.The stomach is in the chest and the lungs are squashed. This is my husband and my first baby, I just pray each day that we have the strenghth to get through this. |
| Name: | Helena Fergusson |
| Name: |
| Name: | Nancy Jones |
| Comments: | I didn't know your organization existed. I thought back in 1983 that I was alone and had never heard of CDH. I am so touched right now that it is difficult to write. My Kelly is up there with all of God's cherubs. I have bookmarked your page and will return later.
Nancy |
| Name: | Agata |
| Comments: | Hello!! I was wondering if anyone can help me!! I am doing research on hernia and I have to interview a person that has or had it. Would anyone please please help me! I appreciate it alot. Thank you.
My email: serduszko35@hotmail.com |
| Name: | carrie morton |
| Comments: | great website |
| Name: | Hansa |
| Comments: | I am 48 years old lady,Doctor last week told me that i have Diphagramatic Hernia,I am in normal health, little breathin tight when i run or walk fast,and my heart replace in right side |
| Name: | Joanne Mercier |
| Comments: | I have been inspired by finding Cherubs. My little boy died earlier this year from CDH and it has been life changing. Having your web site to go to has made a world of difference for me. Thank you.
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| Name: | Joanne Mercier |
| Comments: | I have been inspired by finding Cherubs. My little boy died earlier this year from CDH and it has been life changing. Having your web site to go to has made a world of difference for me. Thank you.
|
| Name: | Joanne Mercier |
| Comments: | I have been inspired by finding Cherubs. My little boy died earlier this year from CDH and it has been life changing. Having your web site to go to has made a world of difference for me. Thank you.
|
| Name: | Joanne Mercier |
| Comments: | I have been inspired by finding Cherubs. My little boy died earlier this year from CDH and it has been life changing. Having your web site to go to has made a world of difference for me. Thank you.
|
| Name: | Sheila |
| Comments: | God gives us angels, and sometimes He takes them away from our sight. Your angel is with you, and her brothers, and her grandparents, each and every day. You just cant see her, touch her, hear her. My mother went to be with God 9 years ago, I still feel her with me, I still smell her smell. I have an angel. You have an angel. God bless you each and everyone. God Bless You Alisha!!!!! |
| Name: | Tammy Howitt (uk) |
| Comments: | Our son James was diagnosed with a LCDH at 27 weeks in utero. Unfortunately on 27 October 2000, the day my pregnancy reached the full term he gave up the fight and was stillborn the day after. He was born so perfect and beautiful, but it was not to be. It was the cruellest and hardest time of our lives but as we had two older children of 7 and 4, life had to go on. We will never forget James as he is in our thoughts every day and quite often the topic of our conversations with our children. They must understand. We now have the priveledge of holding our new gorgeous baby girl, Victoria, born 13 months later. We still cry for James, as this still does not remove the pain, but we hope this story can maybe give other parents/grandparents some hope that sometimes from the hardest lessons in life, so much can be learned by so many. Our thoughts are with you and God bless you all.
Please feel free to contact us by email - vinnyhowitt@hotmail.com |
| Name: | wendy werner |
| Homepage URL: | http://txwendyl@aol.com |
| Comments: | i'm sorry i have no comments at this time. My heart is filled with to much pain. |
| Name: | amanda ditchfield |
| Comments: | my beautiful baby Jay Ashleigh was born on the 9/6/01 with a CDH. We had no clue of it until he was born he is now an energetic 11 month old with absolutely no signs of his horrendous first weeks of life. Up until Jay was born I didnt even know there was such a condition as congenital diagphragmatic hernia so as you can imagine there are not a lot of people that I talk to about Jay that understand what it was that he had. Its a welcome change to actually read other parents experiences of CDH that so mirror my own experiences and feelings. Thank you for a well thought out imformative website |
| Name: | David and Kathy Bailey |
| Comments: | Our son was diagnosed with CDH about my 17th week of pregnancy. His stomach and part of his bowel were in the upper left chest. Surgery was done on his 2nd day. The Dr. put a patch in the left side as there was no diaphragm on the left at all. He was put on the ventillator with nitric oxide right after delivery. His left lung went from 15% in size to over 50%. That was really good, but he had been having chronic pulmonary hypertension and passed away at nine days old. Also, his rib cage was not fully formed. Since the lungs were not able to expand during my pregnancy the rib cage was not able to develope properly. He could of lived with that, we were told, but the P.H. would not let up. If anyone would like to contact us our email is DENVER1DAVE@prodigy.net We were mentally prepared as we could of been but no one can really be prepared for the death of their child. It is very hard. We will miss Lathan Evan very much. Kathy and family |
| Name: | Marie aka Saffron |
| Comments: | Dawn, I just visited your website and am to say the least, impressed beyond words. As a psychologist I feel that the information on this site must prove so helpful for parents and the warmth and love I felt just reading your pages affected the psychic in me to the point of tears. I already knew that you're a very special person, but now I hold you in the highest admiration and love. After all you've endured in life, you pull yourself above your inner grief to help others. I am so very proud to call you my friend and so look forward to my visit and meeting all your friends here.
God Bless Marie xxx |
| Name: | Tara Murphy |
| Comments: | I am 32 weeks pregnant and in June I will be delivering a baby girl with LCDH. She was diagnose at 27 weeks and these past few weeks have been bearable, but only because of CHERUBS. This sight has saved me from going absolutely insane and the support of the CDH parents are amazing. I have learned more from the families on CHERUBS then I could have in any library!!! Please pray for baby Taylor Theresa Marie.
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| Name: | Stephanie Maerten |
| Comments: | This is a wonderful site. My husband and I just recently got on the internet and I have spent alot of time on this site. My son Cody was born in September of 1999 with left sided CDH. He is a fighter and we thank God every day that he survived it. For anyone out there who is worried about having another baby after having a CDH baby...don't be. In July of 2002, I delivered a beautiful and perfectly healthy baby girl. I am glad that I didn't let my fears talk me out of it. She is a wonderful part of our family. |
| Name: | Emera |
| Homepage URL: | http://www.chihuahua-dogs.com |
| Comments: | Thoroughly enjoyed your site! |
| Name: | Nancy Uribe |
| Comments: | was checking out how nice this site is getting. Would like to know if any parents out there have a child that is around 7 and still is oxygen dependent..just like my son, Alejandro is...can e-mail me at..rugrat_92504@yahoo.com and questions raising a special child with this condition feel free to email and would gladly tell you about my experience with this wonderful child....Thank you...and good luck.... |
| Name: | francesca Ienco |
| Comments: | We lost our daughter Lysa-Marie to CDH on the 26 April 1996. I am still trying to find answers. It is comforting to to know that you have this web site to turn to. Thankyou for understanding. You can email me at francescai@bigpond.com. |
| Name: | Shelley Healy |
| Homepage URL: | http://www.little-miss-alien.co.uk |
| Comments: | Almost 21 years ago, I was born 2 months prematurely with CDH, 2 other hernias, a hole in the heart and no sucking reflex. There was no diagnostic equipment to diagnose prenatal CDH then. First they didn't think I'd survive, but against all odds I lived 17 years before my CDH was even discovered! After all that time I'd developed many problems like asthma, malnutrition and even CFIDS. I almost didn't make it through the surgery which went wrong, but I obviously did, and despite having ME and going blind, I am now studying at university in London, UK. I am hoping to become a Cognitive Neurologist and can only say that after my experience I am convinced that I am here for a reason, God chose to save me and whilst I haven't discovered what my purpose is, I'm sure I will soon. To anyone expecting a child with CDH, or who has a child awaiting surgery, never give up hope. I am truly amazed that I survived so long without any intervention. And to those who have lost, you can be sure that their reason for being was just to light up your life, no matter how long that light shone for. Always, with love, Shelley xxx |
| Name: | raymond lum |
| Comments: | Greetings,
Just from visiting your website, I am in awe of the time and effort going into this project. My heartfelt wish to you all for the best. Be Blessed!! Sincerely, Ray Lum |
| Name: | jill hagen |
| Comments: | this is a precious site.god bless each of you. |
| Name: | Marisa Canaday |
| Comments: | I sympatize for the poor sweet little babies who desperatly need help. I know that with the love of there parents and close ones that will survive with God's help. Please Pray-no matter what religion you are. |
| Name: | ERICA HERRERA |
| Comments: | MY SONS NAME WAS ADAM I GAVE BIRTH TO HIM ON 02/01/02
HE PASSED AWAY ON 03/05/02.ACCORING TO MY DOCTOR MY SON WAS DOING FINE BUT WHEN HE WAS BORN THEY FOUND OUT HE HAD LEFT SIDED DIAPHRAGMATIC HERNIA THIS WAS A SHOCK TO ME ALL OF MY OTHER KIDS WERE FINE .THIS WEB SITE HAS BEEN SO HELPFUL I THANK YOU GUYS .. |
| Name: | Jenni |
| Comments: | I just found outthat a dear friend and her husband's baby was born with cdh. I was devistated however it has really helped to read about it on this sight and understand it more. |
| Name: | Martha C. Lady |
| Comments: | I recently found out about CDH, albeit through the very painful experience of my brother's baby girl dying soon after birth from it. I was happy to read that both my brother and his wife had the opportunity to hold their precious baby, talk to her, sing to her and acknowledge her passing in that manner. Thank you for the information and for the encouragement you give bereaving parents.
Sincerely, Martha |
| Name: | James Miller |
| Homepage URL: | http://www.jamesmiller.com/index.html |
| Comments: | This is a second post to say that our grand-daughter Imogen is now home, feeding, breathing and ocassionally crying well! She spent a total of only 30 days in the Royal London hospital. Fingers crossed for the next three score and ten years! |
| Name: | craig alan r. ebay id tootsiewear |
| Comments: | hello! i found your website thru ebay while i was searching for bugle boy shirts. I currently auction on ebay from september thru march hand crochet slippers but of course i will make them any time of year. Craig ebay id tootsiewear |
| Name: | Hope and Randy Clyde |
| Homepage URL: | http://clyde@mstar2.net |
| Comments: | This is the 3rd time I have signed the book. I am happy to report that our son, Tyler, that was born on 1-24-02, came home to St. George, Utah on 2-20-02!!! He has kicked butt all over an expectations. He never came off his "honeymoon" after surgery. He is on oxygen, Reglan and Zantac-and that's it!!! He was in the NICU for 1 day less that 4 weeks, we learned that someone always has it worst than you!!! 3 days after Tyler was born, the doctors told us that he was the sickest baby in the unit, even then, we wouldn't have traded anyone else children. We are so lucky to have Tyler in our lives. We have been blessed. There is life after the NICU and we're glad Tyler will be here to experience it with us!!! Life is good!!! -The Clydes |
| Name: | Tammy Holcomb |
| Homepage URL: | http://tomtam@radicus.net |
| Comments: | I found out at 20 weeks that our baby had CDH. I carried our little boy to term and delivered him at Johns Hopkins Hospital. The Doctors did not think he would make it out of the delivery room. He was born on 2/11/2002 and lived 15 days. He went to heaven on 2/26/2002, which was a surprise to his Doctors. He was doing very well and to this day we do not know why he died. I guess God needed another Angel. This is a very difficult time for our family and there are times I am not sure if I can make it through this. Tanner Luke gave me so much hope, but right now I feel lost. |
| Name: | Marty & Stephanie Maerten |
| Comments: | Our two and a half year old son was born with CDH. Although it was a very difficult thing to see him in the neonatal intensive care unit for three long weeks we are pleased to report that he has grown to be a happy, healthy, vibrant and curious toddler. |
| Name: | Tracy Keckler |
| Comments: | I am so glad that this website exists. It is full of helpful and supportive information. The work that is being done with Cherubs is truly a blessing. Keep up the good work. God Bless!! |
| Name: | Tina Beachnau |
| Homepage URL: | http://kbeach5334@cs.com |
| Comments: | I was blessed with a son on November 13,2000,Kyle.He had his surgery at 3 days old at the University of Michigan.Kyle was never placed on ECMO,his cdh was undiagnosed.Everytime I look at him I think of how blessed we really are.He is doing wonderful and I thank God everyday.He spent about 35 days in the hopital and came home just before Christmas with no problems.
He is now running and has begun to talk.We are having so much fun together. |
| Name: | Sheri Reed |
| Homepage URL: | http://www.angelfire.com/amiga/legobeavers/blanket.html |
| Comments: | Thank-you so much for having such a wonderful site. Gosh its so nice to have all this support. I included my web site above and I will also leave my two angels web sites here . If you get the chance come and see Heaven, My Blanket or visit my two angels. www.geocities.com/angelmomfriends/sheriswelcome.html
Yours Truely Sheri Reed.. |
| Name: | The Wizard |
| Homepage URL: | http://www.jazzfestwizard.com |
| Comments: | Hello from New Orleans. |
| Name: | joshua weber |
| Comments: | hey we share the same name |
| Name: | sacramentocastillo jaen |
| Homepage URL: | http://sacramentocastillo_j_@hotmail.com |
| Comments: | Until a few days I became aware of the possibility to have a hearnia. nOW i AM GOING TO BE MORE CAREFUL AND TO READ A LOT MORE ABOUT THE DANGER OF FIND OURSELF WITH A DAGER IN YOUR BELLY. tHANS VERY MUCH. |
| Name: | Mary |
| Comments: | Thank you for providing this site. It is very informativie and helpful for the parents of cdh survivors and of the ones who lost their children. I wish that I had known of this in 1991 when my daughter was born, Ultrasounds did not detect the CDH and she only lived for a few hours. |
| Name: | Kristen B. |
| Homepage URL: | http://www.geocities.com/hydrokris10/Hydro2.html |
| Comments: | What a wonderful and informative site!!! Thank you so much for promoting awareness of birth defects and prevention.
I am a twenty year-old with congenital Hydrocephalus. Please visit my Hydrocephalus Links website, if possible. |
| Name: | Janice & Jim Currence |
| Homepage URL: | http://www,j_currence@msn.com |
| Comments: | We recently lost a granddaughter. Our son and daughter-in-law learned that the baby (Cassidy) had Diaphragmatic Hernia in her 5th month of pregnancy. Cassidy's condition was so bad that her lung had no room to developed. It was a hard for them to terminate the prepnancy. Cassidy was taken home before her birth. We are just learning of this condition. With Doctors help; we hope that other parents and grandparents may one day not have to go through this pain. |
| Name: | James Miller |
| Homepage URL: | http://www.jamesmiller.com/index.html |
| Comments: | On March 6th 2002, our grand-daughter, Imogen, was born with a CDH at the Royal London Hospital in Whitechapel. (A hospital incidentally famous for Edith Cavell, 'the Elephant Man' and the only statue of Queen Alexandra.) We all knew the problem and four days later they performed the operation to rearrange her internal organs and repair the hernia. Perhaps, it wasn't as bad as some, as she was only in surgery for an hour, but just as your classic description says, she only has half of one lung.
Now, as I write she is nearly two weeks old, more or less off her ventilator, can be held by her proud parents and grand parents and hopefully will start to breast feed in a day or so. So don't ever give up hope! You might just be as lucky as we have been! James Miller james@daisy.co.uk |
| Name: | dawnn and glen matthews |
| Homepage URL: | http://members.aol.com/_ht_a/tattooedandbroke/myhomepage/baby.html?mtbrand=AOL_US |
| Comments: | thank you to everyone here. You have all helped me alot. I hate that there are so many of you here, that have gone through having or losing a baby with cdh. However, at the same time.....i'm so glad that you are all with me.
In memory of my perfect little angel Sydney Olivia Matthews 11/28/01 - 1/4/02 |
| Name: | C. Penn |
| Name: | Christine Rhodes |
| Comments: | On November 22 2001 I gave birth to a baby girl named Katelyn Rhodes. We had no knowledge about there being anything wrong. When she was born she did not cry. They said they would take her to the NICU and that she probably had something she was choking on and they would help her and bring her back. They did not no why she was having problems until about 40 minutes later and the x-ray. They said they would have transpoted her to have surgery but they could not keep her heart rate up. She only got to live one hour. When they came back and told me. It was the saddest day of my life. I cry every day and I wish they would had found this info. earlier and maybe they could have saved her. I feel so alone. Lots of peole Ise around ask me how my baby is and then I have to explan and they've never herd of anything like this. I just hope my little angel knows I love her and would have done anything for her. And she will never ever be forgotten. She will always have a special place in my heart.
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| Name: | Christine Rhodes |
| Name: | Kelly Mitchell |
| Comments: | When I was about 23 weeks pregnant my doctor discoved my baby had CDH, he gave me and my husband the option to have an abortion. On November 29, 2001 Cheyenne Riki was born. She had to have surgery when she was 3 days old. On December 26th we were able to take her home. Every day I look at her and think, how could they have suggested I abort such a beautiful girl.
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| Name: | Andrea Howerton |
| Comments: | my daughter Sarah was born 5/11/99 with CDH. please feel free to contact me if you are in need of help or have questions!
princess_sarah_brianne@hotmail.com |
| Name: | Dawn Cole |
| Comments: | I was born with Congenital Diaphragmatic Hernia March 17, 1969. I received surgery at Children's Hospital in Columbus, Ohio, one or two days after I was born. I visited your website to show my four darling sons why Mommy has such a large scar on her stomach. Thank you! |
| Name: | Mary Bowman |
| Comments: | On 15 April 1991 my husband and I had a beautiful baby girl Caley Nichol was born with an undetected severe left sided diaphragmatic hernia. She only lived for 18 hours, but I know that I will have eternity to hold her in Heaven. I wish that I had known of a group like this then. I am glad that this is available for parents. |
| Name: | Jessica Lee |
| Comments: | Sorry about giving out the wrong E-mail it is jdlee100574@yahoo.com. What can I say I have 3 of them. |
| Name: | Jolene |
| Comments: | Jessica-
I tried emailing you and your emails keep bouncing back. Would love to email you. My email is LilMamaN2BabesII@aol.com. PLEASE email me anytime or post back here w/ correct email and I will email you!! |
| Name: | Jessica Lee |
| Comments: | Morgan Anne Lee was born 11-18-2000. We found out at 25 weeks that she had a left sided CDH. My OB sent me to Little Rock, Ar. they told us that she only had a 30% chance of living. We had one daughter already, but to be giving birth to one that would die was killing me. My husband left for bootcamp on Sept. 6th. This made things worse knowing that I would be doing this all by myself, this was something we could not change. On Oct. 17th I went into labor and was taken from Jonesboro, Ar. to Little Rock leaving my 16 mth. old daughter with family. They stopped my labor 12 times before I gave birth. Jerry was only able to come home for the first 4 days I was in the hospital. He never got to see her born or go through the hell of her being in Ark. Children's Hospital.Morgan had surgrey at 12 hours old. 2 days later they took her off of life support. I held my breath, but she was breathing on her own. At seven days old she started bleeding, The doctors said she would never make it until the morning. I set and held her all night and prayed. Morgan had already died in my arms 4 times and God gave her back to me. Before she was ever born I miscarried her twin. Why would God take another baby from me? By 6 am Morgan was fine. Looking into her eyes, I knew she was here to stay. What she had was call C-def. She still very sick when I had to go get my husband from bootcamp. When I left I told her to get better, her daddy would fall apart to see her this way. They gave her some blood as I was leaving. Two days later Jerry and I came back to find a Bright Eyed Newborn glad to be meeting her Daddy for the first time. My mother had been ther with her, she called and told me Morgan was doing well and ready to go home. The next day we all came home, just in time for christmas. It was the best one I have ever had.Morgan is now 15 mths old, weight 29 lbs. @ birht it was 8 lbs 3 ozs. You would never know she was ever sick. This is a happy ending some are not. If there are any of you that would like to know more, it might help you in your time of need. E-mail me jessicadlee100574@yahoo,com I would love to hear from parents with little CHERUBS like my Morgan. |
| Name: | Mecinda Dunagan |
| Homepage URL: | http://My deepest sympathy goes out to each and everyone of these parents. And I would like to commend you all for your stength. |
| Name: | LINDA PEREZ |
| Homepage URL: | http://HEIDI77@PRODIGY.NET |
| Comments: | I AM 28 WEEKS PREGNANT WITH MY FIRST CHILD AND JUST FOUND OUT THAT MY UNBORN BABY GIRL HAS CDH. MY HUSBAND AND I ARE STILL UNDECIDED ABOUT WHAT WE WANT TO DO. i WANT TO HAVE FETAL SURGERY, BUT MY HUSBAND ISN'T TO THRILLED WITH THAT. IS THERE ANYONE OUT THERE WHO HAS GONE THROUGH THIS SURGERY. IF SO PLEASE E-MAIL ME. |
| Name: | Nancy Kowalski |
| Homepage URL: | http://nk2118@aol.com |
| Comments: | Hi - I can't beleive I have found a parent support network! My son is 16 years old - was born with CDH in November of 1985, had surgery on the day of his birth and again for a re repair at the age of 1 year. It's been a long and difficult but wonderful road - He does have some major problems, the worst being pulmonary impairment - it is sometimes hard for him to keep up with other kids his age and he never makes the cut on the varsity sports teams. He has had many bouts of bronchopneumonia and has asthma which was much worse when he was younger. He does have some reflux but never had a feeding tube - he is underweight - and now we are facing surgery for scoliosis. But with all this, he has lived a completely average and normal life - he is a sophomore in high school, an honor student, likes bowling and chess and fishing and boating - is a very picky eater but loves chocolate - and he is one of the best young men I have ever known. I wish this site was around a long time ago but I plan to visit now often. |
| Name: | JACKIE SHERER |
| Comments: | I HAVE A SON WHO WHERE BORN WITH CDH ON HIS RIGHT SIDE. HE WAS BORN AT PEIDMONT MEDICAL CENTER IN ROCK HILL, SC AND HAD TO BE AIRLIFTER TO CAROLINA MEDICAL CENTER IN CHARLOTTE, NC ON DECEMBER 19,1999 WHICH I HAD BEEN IN LABOR FOR 15 HOURS. JAC'QUAN IS HIS NAME AND HIS NOW 2YEARS OLD AND VERY ACTIVE LITTLE BOY WHO IS DEVELOPING NORMAL ACCEPT HE HAS ASTHMA VERY BADLY AT TIME,HE HAS BEEN IN THE HOSPTIAL ABOUT 4TIMES FOR ASTHMA AND ITIME FOR RSV,BUT I THANK GOD EVERY DAY FOR MY LITTLE ANGLE BECAUSE THE DOCTORS GAVE HIM ABOUT A 65% CHANCE OF SURVIORING.I WOULD LIKE TO THANK GOD FIRST BECAUSE HE WAS THE ONLY ONE WHO KNEW IF HE WAS TO LIVE OR DIE, AND I WOULD LIKE TO THANK THE DOCTORS AND NURSES WHO CARED FOR HIM BECAUSE THEY TREATED HIM LIKE IF HE WERE THEIR ON AND THEY DID A WONDERFUL JOB AND MAY GOD BE WITH THEM AND BLESS THEM AS THEY KEEP DOING THE JOB THEY LOVE TO DO. AND TO ALL THE OTHER PARENT WHO HAS A CHILD BORN WITH CDH MAY GOD BE WITH YOU AND KEEP ON HAVING FAITH AND EVERYTHING WILL WORK OUT FOR THE BEST. I AM VEY GREATFUL THAT THE LORD KEPT MY LITTLE MIRACLE HERE ON EARTH FOR A REASON AND I GIVE HIM THE THANKS BECAUSE WHEN I SEE MY LITTLE BUNDLE OF JOY RUNNING AROUND THROWING A BALL, KICKING A BALL AND RIDING HIS TIKE ALL OVER THE HOUSE AND LOOK BACK TO HOW SICK HE AS IT IS JUST A MIRACLE TOO SEE. HE ALSO WAS PLACED ON ECMO FOR 12DAYS AND EVERYTHING STILL WORK OUT FOR THE BESTIN THE END.
JACKIE SHERER TUESDAY FEBRUARY 19, 2002 9:54PM |
| Name: | Steve and Teresa Thompson |
| Homepage URL: | http://tthompson@tomsfoods.com |
| Comments: | My daughter was born 06-12-1999 with a left side diaphragmatic hernia. There were no known factors that made anyone think that she wouldn't be healthly. I was in labor for a long time and they could feel her head but she was stuck in the birth canal. An emergency c-section was then decided. They tore my bladder among other things getting her out but that was okay because the health of my baby was my first priority, my sweet little angel-Stephanie. My husband went with Stephanie to be checked out while the surgeons continued to work on me. When I was in recovery, the Doctors came in to tell me that Stephanie had test and x-rays taken and that she had a diaphragmatic hernia. She was going to be packed up and transported to Egleston Children's Hospital in Atlanta, Georgia. My husband once again went with Stephanie. I had to wait in Columbus, Georgia until my OBGYN would release me from the hospital. I was released from the hospital the same day that Stephanie had her surgery to fix her hernia. Steve called me at the house to let me know that she came through the surgery great and they didn't expect any complications. I just sat on the couch and cried that she came through the surgery with flying colors but also that I couldn't be with my baby on the hardest day of her little life. I packed up what I could and the next morning I was off to Atlanta with a catheter bag for my bladder, stitches in my belly and a spirit that I am going to see my baby no matter what! When we got to the hospital the NICU unit let all my family come back with me to all cherish the mother daughter reunion. It was the best day of my life getting to see and hold my daughter for the first time after all the things we just went through. She was released from Egleston after 20 days with an NG Tube and a few minor feeding problems but all in all she is as healthly as you can get from such an ordeal. Now she is 2, her development is normal and she is just 2 but going on 10. However, she is having an Atelectasis problem of the lower left lobe on her lung. With modern science and the help of the lord above I know we as a family can overcome this obstacle as well. I would love to hear from other families that have cherubs with Atelectasis problems.
Teresa Thompson Columbus, Georgia |
| Name: | Jackie Sherer |
| Comments: | My son Jac'Qaun who was born on December 19,1999 was born with a right side diaphragmatic hernia which is spleen,colon,smallbowel,liver where push up in is chest cavity.He was born at Piedmont Medical Center and had to be airlifter to Carolina Medical Center because they had the equippment to treat him with.They repaired the hernia on
12-21-99 and they had to put him on the vent,nitric oxiod and on the next day he had to be put on ECMO which he was on 12 days and after he came off the ECMO machine he had to be given oxygen, nitric oxiod again to help him to get to breath on is on, but thanks to god he is still here today with us. He is a very active 2year old with asthma which he has been in the hosptial about 4times and 1time for RSV. I am glad that i had faith in the lord because i know that he kept him here for a reason because when he was born the doctors gave him a 65%chance of living.I also like to thank the doctors who care for him because they where very supported and honest with us about every thing. Jac'Quan is very smart he has problem with weight gain and he had a slightly speech problem but with the help of speech 2 days out the week he is making alot of progress.I will like to say to the other parents who has had a child with CDH just keep the faith and put god first every thing will work for the best. |
| Name: | Jackie Sherer |
| Name: | karen magee |
| Homepage URL: | http://hometown.aol.com/karenkissy |
| Comments: | loved your webpage very very informative! |
| Name: | Erika Boucher |
| Homepage URL: | http://bes@boucherenergy.com |
| Comments: | I have a 5 year old son who is my life. He was diagnosed with left side CDH at 19 weeks. He was given less than a 50% chance to live. I decided against any testing - I figured that if he was not going to live, that would be up to him.
He spent 7 weeks in the Hospital. The NICU was fantastic. He had several operations. He is fine today, except for asthsma. He had to have his diaphram repaired for the second time when he was 2. I am taking him to the hospital on Monday because he has been complaining about " his stomach feeling funny". Has anyone had anything like this explained to them by a todler/child of CDH? I am very afraid to take him to the hospital for tests. I have a love/hate relationship with the hospital - if you know what I mean. Any comments would be appreciated. My little guy is my world. Erika |
| Name: | Felicia Knight |
| Comments: | I have just read the letter from Amanda Rinehart. Our prayers are with both you and your daughter. I know that you both are going through a very, very hard time. We went through it with my grandson. But in a year or so you can look back at these times and say THANKY YOU GOD FOR MAY BEAUTIFUL DAUGHTER. For every flower that blooms you have to have a little rain. |
| Name: | AMANDA RINEHART |
| Comments: | MY DAUGHTER WAS BORN ON JANUARY 16, 2002 WITH CDH IS IS NOW ALMOST THREE WEEKS OLD AND STILL NOT STABLE ENOUGH FOR SURGERY. I FOUND OUT ABOUT HER CONDITION WHEN I WAS 27 WEEKS AND THE DOCTORS GAVE ME ONLY A 2 % SERVIVAL RATE BUT IN MY EYES THAT WAS STILL A CHANCE. TODAY SHE IS STABLE ENOUGH FOR SURGERY BUT WE DISCOVER ANOTHER PROBLEM, SHE HAS AN INFECTION SO SHE CANNOT HAVE SURGERY UNTIL THE INFECTION IS RESOLVED. THIS IS THE HARDEST THING I HAVE EVER COME ACROSS IN MY LIFE AND JUST PRAY THAT EVERYTHING TURNS OUT. BUT THANKS TO THE NICU AT UNIVERSITY MEDICAL CENTER AND THE GREAT MEDICAL ADVANCEMENTS IN LAS VEGAS SHE IS STILL HOLDING ON, IT IS AMAZING HOW STRONG SHE REALLY IS. |
| Name: | Norma Wika |
| Homepage URL: | http://tonejunior@hotmail.com |
| Comments: | My little granddaughter, Anna Elizabeth, is a survivor of cdh. She is a beautiful, healthy, happy baby today thanks to God, all the prayers said for her and the wonderful doctors and nurses who cared for her. Miracles do still happen when you let go and let God. |
| Name: | Brenda Huggett |
| Homepage URL: | http://lhuggett@msn.com |
| Comments: | Our nightmare began when I was 18 weeks pregnant. I went in for a routine ultrasound. I was very excited to find out the sex of our baby. We already had 3 boys, ages 14,12,and 10 and of course, wanted a baby girl. So you can imagine my delight when I found out that I was carrying our long-awaited baby girl. I was so happy when I went down to see my regular doctor. My world fell apart when she told me that my baby had a diaphragmatic hernia. I had no idea what that was, but I was scared to death.
The next day, we went to see a specialist and found out that our baby did indeed have cdh. We were devastated. We were told our baby did not have much of a chance since the hernia was detected so early. She had a left-sided hernia. Her stomach, her spleen, and most of her intestines were in her chest. I had an amnio done and there were no chromosomal defects.That was a relief. The first option,being abortion, was no option for us. The second option was an experimental surgery on our unborn baby. The third option was to wait and see how our baby progressed and to pray a lot. We chose to put our faith in God and let him carry us through this awful time. We had so many people praying for our Anna Elizabeth,(we had already named her) people we didn't even know. Our priest offered up a Mass for her. It was the longest 4 months of our lives. The date was set for November 9,2001 for me to have a c-section. Anna was breech. I was excited, scared, happy, sad, hopeful, and nervous. She looked so beautiful when she was born. You wouldn't have even known there was anything wrong with her. She was taken away to the NICU. I didn't get to go see her until that night. She looked so fragile and helpless hooked up to all those machines. We put many religios things in her room. A crucifix, relics of saints, an Agnus Dei, many holy cards and a St. Philomena cord. We also put holy water and water from Lourdes on Anna. We prayed the Rosary by her side. Anna had her life-saving surgery by a wonderful doctor on November 15. She remained stable through the whole surgery, which lasted an hour. We were so scared. What an awful feeling. She was on the high-frequency vent for 4 days, then on the regular vent for about a week and a half. She was then taken out of isolation and put in with the other babies. She just had one more hurdle to get over, that was eating. She had no problem whatsoever. She kept it all down aside from throwing up one time. God really gave this girl some strenghth. She was in the hospital for two more weeks. She never had any setbacks. Anna was released from the hospital on December 10, 2001. What a wonderful day. She was a Christmas present from God. Anna Elizabeth is now nearly 3 months old and is a beautiful, healthy, 11 pound baby girl without any problems, which is truly a miracle. She has changed our lives dramatically. THANK YOU GOD!!! Never give up hope. God is there for you. Just find Him and never let Him go! Brenda Huggett |
| Name: | Samantha Beggs |
| Comments: | Thank You for this web sight. I didn't know CDH was as common as it is. I had a daughter on July 18,2001, she died 2 hours after she was born from CDH. My cousin also had a daughter who was born with CDH and so it was a big concern of mine but the doctors didn't listen to me. I am now pregnant again and I am scheduled to have an ultrasound done at 18 weeks to see if this child will have it as well. I worry every day that I will lose another child and I don't think I could survive that again. This web sight has given me comfort and hope thank you. |
| Name: | Kim Watson |
| Name: | Paul Houkes (Netherlands) |
| Homepage URL: | http://paul.houkes@nintec.com |
| Comments: | Hi, this is an important website (28 January 2002)
our unborn child (30 weeks) has been diagnosed with CDH. Some intestines and stomach in chest cavity. One lung seems OK, the other (left) is minimal. No chromosomal issues and some shift to the right of the heart. If anyone has useful information for us during this confusing time, please let us know. Thanks |
| Name: | Paul Houkes |
| Homepage URL: | http://paul.houkes@nintec.com |