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Diaphramic Hernia

Hi I am 26 years old and 21 weeks pregnant with my 1st child and have just found out that my baby has a birth defect - A Congential Diaphramic hernia which means that his Lungs are getting squashed by the stomach which is too high above the diaphram. I have also been told that there is nothing that anyone can do and we will just have to wait and see how it's lungs work when it is born and it might not survive after it's born, it just depends. I am totally distraught, got to try and get through this wil a positive attitude but it's hard!! Anyway I was wondering if anyone else has or knows of anyone who has had the same thing or has any other info they could give me as I would really appreciate it. Thanks.
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replied April 17th, 2007
Extremely eHealthy
I am sorry to here about the dx. It sounds like a pretty rare condition.
I am just grasping at straws here but I wonder if there is a specialist somewhere who does prenatal surgery to correct this. It probably isn't possible but I am wondering.

I just can't imagine what you are going through right now. I would be completely devastated.

Take care,
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replied April 18th, 2007
Diaphramic Hernia
Thanks for your reply, Yea I am very very devastated, however need to get through the next 19 weeks without worrying about it too much, which is hard. My Doctor told me about Prenatal surgery which has taken place before and caused the baby to Die, he said that the best thing to do is just leave it and hope that the lungs are ok when it is born. I have heard that taking steriods can help Lung Development but I will need to check this one out. Thanks again, Jenny.
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replied December 15th, 2008
x
hi i saw your message and ive just found out that my unborn babies got the same thing. im just wondering how your baby was after the birth x
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replied December 16th, 2008
Diaphragmatic Hernia
Hi there, I am sorry to hear that your baby has been diagnosed with CDH. My Baby Boy was born in Aug 07 and i'm glad to say he is now perfectly healthy. It was a bit of a struggle at first, I was enduced 3 days before my due date, he was whisked away as soon as he was born & stabalised in an incubater, he was in hospital for 6 weeks before we got home, we still need to go for check-ups & he is on medication for reflux, apart from that life is pretty normal. My situation was exceptional alot of babies can be in hospital for 6-9 months and no two cases are the same. What have the doctors told you so far?

There are alot of links for cdh websites that are very helpfull on that. But no matter what you read and what people say always remain positive.

Good luck, I hope you get the best posible outcome & that your baby recovers quickly.

You can contact me again if you want any advice.

Take Care.

Jen
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replied January 8th, 2009
not the only one
hi im brenda im 18 and im 19 weeks with my first baby. and i just found out that he too has that. and his heart is on the right side of his chest and his stomach is on the left and there both on top of his lungs making it where they cant grow. and im so scared and dont know who to talk to about it. i have to go to the docs every two weeks and they are keeping an eye on him as he grows and the doc that i talked to told me that if i go though with the pregnancy (which im gunna cause thats my little baby in there) but anyways he said that after the baby is born and they do surgery that he will have a 50% chance of living. and its so hard to know. but all we can do is pray and hope for a miracle. if you need some one to talk to write me.
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replied February 21st, 2009
diaphramic hernia
My son was born with a diaphramic hernia 10 years ago. At birth he was air lifted to sick kids hospital. The doctors had no idea what was wrong with him. He was immediately put on breathing machines, because he was unable to breath on his own. I was very distraught to say the least. He was immediately diagnosed at Sick Kids Hospital with a diaphramic hernia. He had surgery when he was 2 days old to repair the hernia and pull down the stomach contents and bowels from the lung area. His left lung was only working at a 50% capacity at that time. He remained in the hospital for 3 weeks and recovered very well. He was removed from the breathing machine when he was 1 week old. I was able to hold him in my arms when he was 2 weeks old. He was feed through a tube with my breast milk for two weeks. After two weeks I was able to hold him in my arms and nurse him. What a glorious feeling. I do not ever remember crying so much in all my life than those 3 weeks. Nothing seemed to matter at that time only my son. Today he is a very healthy 10 year boy who likes to play with lego and swim. His lung is now working at a 90% capacity. All the anguish, tears and prayers worked he is truly a blessing to have.
Although he will not be able to run a marathon, he has done well. Life is fragile but miracles do happen. Your child will be in our prayers. My son will say a special prayer for him, since he truly believes in miracles. Have faith I believe there is always a happy ending.
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replied March 24th, 2009
CDH
I had a son who would have been 22 this year, he survived for 2 weeks having undergone 2 operations. Medicine has made so much progress since then. There is a treatment which can be performed before birth were they inflate a balloon into the babies chest cavity through there mouth, this is removed prior to birth. Its plan is to expand lung capacity. Its not without risk but if the babies lungs are bigger and stronger as a result surely they will be stronger to fight after they are born. Its a risk I would have been glad to take given the chance with my son. There is a documentary on cable that discusses the procedure, the channel is real lives. Its good to here success stories because I know my sons treatment was in the experimental stage, I like to think he played a part in future successes. Hope all goes well for you moms to be.
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replied April 13th, 2009
My Daughter was born on Dec 5, 2008. She had CDH. The doctor did not know. They sent her away to get it checked out. When she was 3 days old she had to have surgery. She did so good and recoved very good. She had a little eating problem and still dose today. She is still small but is growing fine.I am so blessed to have the doctor that took care of her is around. I may be able to anwser qustions if u need them.
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replied April 28th, 2009
Little munchkin with CDH
My little guy has been diagnosed at 24 weeks with CDH. Right now it appears that just his intestines and stomach have gotten above the diaphragm. I'm an RN and sometimes knowing too much can be stressful. A friend told me I need to just focus on being the incubator as it is truly out of my hands. What I would love to hear stories from parents who have had children with CDH. How your little one is recouperating, the struggles and rewards.
If any of you that read this are pregnant like me (i'm 28weeks) lets focus on the incubation. The more mellow we stay the more likely our little ones will reach term and the stronger they will be to survive outside the womb.
Cheers Julie
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replied June 10th, 2010
CDH
Im 21 weeks pregnant with my 1st baby and found out my little cutie had CDH at my 20 week scan. Everything was going so well, till then. I was totally distraught when i found out... but over the last week and half have managed to get my head round it...i have the best supporting Hubby and Family...and have complete faith in Allah that things will go well. If we give up hope, we cant expext much from anyone else. We have to stay strong and positive for our babys. Technology is so advanced these days, that things are looking better all the time. Just hang in there. x
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