Any Advice on Diaphragmatic Hernia Diagnosed on Unborn Child?

Hi M.,
My heart goes out to your family. I have not heard of this before, but why I am writing is to let you know that I teach a very gentle method of childbirth, called HypnoBirthing. It is wonderful for baby and mom. Teaching stress free method of birthing and also stress free living. Sounds like it could be helpful due to the high stress of this situation. It helps even in C-section cases, allowing Mom to calm herself, therefore calming baby. If interested, go to www.YourPeacefulBirthing.com.

I will pray that all goes well with mommy and baby.

I don't have any experiance with DH but my Nephew did spend the 1st 3 months of his life living at the NICU at U of M hospital. Some of the things that were helpful for my Sister-in-law were having people visit when she couldn't be there, she felt better knowing that he wasn't alone. Gas cards!!, freezer meals, gift cards for food, and babysitting (she has 2 older children).
I will pray that the baby will recover well!
If the baby is at the U of M the nurses and staff are amazing!!
Blessings, K.

Our cousin's daughter was born with this condition, diagnosed a few weeks before her birth. They lived in Texas and spent the better part of several months at the hospital with their daughter. She was also on the ECMO machine and had difficulty with eating. She is now over three and doing very well. She is a smart little girl with some physical challenges (her muscles are just a bit slower to develop, but losing most of the first year of development in a hospital will do that to you) but is happy, sweet and adorable.

Good luck!

I know about diaphragmatic hernias from my line of work - what I can say about them is that the presentation at birth will be highly dependent on how developed the fetal lungs are before the baby is born - if they are what they call severely *hypoplastic* and small in size and there are a lot of displaced gut organs surrounding the lungs (which caused the lungs to not to be able to expand in size through fetal breathing), then the outcome is not as good as if the lungs get to a near normal or slightly less than normal size. If the lungs are pretty normal in size, then it is usually a matter of replacing the intestines back into the peritoneal cavity (where the stomach and gut organs normally develop)and closing the defect in the diaphragm which is what allowed the gut organs to get up there in the first place. Sometimes there is a defect and it is very small, so that no intestines or gut organs can migrate into the pleural space through the diaphragm to restrict lung development - in that case it is a relatively simple surgery and your nephew should have a very positive outcome. So your nephew's outcome will be highly dependent on what his specific situation is. They have performed in utero diaphragmatic hernia surgeries at Childrens Hospital of Michigan - although risky, if the lung development is very severely affected in your case, it may be something to consider - they basically perform the same surgery before birth that they do after, with the added benefit of further in utero development to the fetus before he is born if the surgery is a success and preterm labor doesn't occur. I would tell your brother to make sure they have consulted with all the high risk people they can before birth - they can absolutely measure the lungs before the baby is born via ultrasound and make an educated guess at how bad the problem is and prepare themselves that way. They may want to meet with the pediatric surgeon beforehand, talk to the surgeon about his/her opinions, how many DH surgeries they have done and their success rate with it. My opinion is that informing yourself with as much medical information about the condition as possible well ahead of time makes you more credible and thus doctors listen to your concerns more and you may possibly get even better care - I would not leave this to chance, "wish for the best", etc. because there is a lot they can do before he is born - and they may have done all of this already. I would add on a personal note that when doctors thought my son was going to be born with a VSD (defect between the atrium and ventricle in the heart)that I was offered a roundtable discussion between my OB, a neonatologist (newborn high risk doctor) and a surgeon well ahead of my due date - there is absolutely no reason why your brother and his girlfriend can't have the same or more - they should ask/demand it and try to control this scary situation as much as they can as parents to be. I hope that the case is not severe and that everything is OK - good luck with everything. I think we will all be interested to hear the outcome.

my grandson was born with a right sided DH. The right side is more rare and fatal than the left. He was missing 98% of his diaphram, his left lung was only 17% of the size it needed to be, the right side, was never visable on any ultrasound, mri, or any xrays, or catscans that were run. When he opened him up, he had a bud of a right lung. His liver, intestines, kidneys, everything was in his chest. His stomach didnt' develop to much of anything. He was born in 2005. The University of Michigan, wasn't even going to try and save him, they had my daughter sign over his organs. She felt like a walking coffin as she put it. Well, she got online and found a surgeon from Florida, Shands Hospital, Dr.David Kays. He is a miracle worker. We went and met him, he agreed to take on my daughters case. He was in the delivery room and as soon as Ayden was born, he and his team vented him. Dr.Kays doesn't do things by a book, He listens to the babies, they tell him when to do the surgeries and what they need. He doesn't do two cases the same. It was very touch and go. The surgery was a week after he was born, he was hooked up for ECMO twice, but then his stats would stabalize and in the end was never on it. He had a couple blood transfusions. It was a long and very hard 3 months down there. He was on every machine I think he could be on, except Ecmo. It was amazing when we'd walk into the NICU and another machine was out of the room in the morning. Look up Dr.David Kays on your computer, either under Diaphramatic Hernia or his name. He'll even answer any questions you may have by way of emails, he's a true gift from GOD. He never left Aydens side the whole first week of his life, never knowing if he was going to make it or not. He actually coded 3 times during the surgery. Ayden came home with a feeding tube, almost with oxygen, we had the house set up for it, but Dr.Kays took him off of it three days before we left the hospital. We still go down to see Dr.Kays every year. Gives us an excuse to go to Florida too. Dr. Kays kept an over close eye on the oxygen level, and Ayden doesn't appear to have any learning problems, even though, Dr.Kays said he probably would with all he went through and struggled through. Right now he is a 3 year old, who throws temper tantrums and is loving just like any other 3 year old. He will never be able to play contact sports, the gortex diaphram is attached to his ribs, so he has a funny shape, that they can fix when he's 12 or so, by breaking his ribs. But I thank God and Dr.Kays everyday for my grandson, the most wonderful baby/child on this planet. Good luck to your brother, his girlfriend, the baby and the rest of you. It is a very hard time. I'll hope and pray for the best. If you have any questions about ANYTHING, please feel free to contact me. Good luck-Sue

In 2003 I gave birth to my first child, Tyson, who had a diaphragmatic hernia, also diagnosed in utero. The hernia was diagnosed at my 18 week ultrasound, at 28 weeks my water broke. I stayed on bed rest at Beaumont Royal Oak, until 32 weeks, when I went into full labor.

Tyson was born in the afternoon on Aug 23 and sadly passed away shortly afterword. Had I made it full term I would have delivered at U of M where they have ECHMO (they do not have this machine at Beaumont), a machine that essentially functions as the heart and lungs of sick babies. Because I went into labor so early, Tyson's already compromised lungs (with a diaphragmatic hernia the bowel travels into the chest cavity and compresses the lungs, so they do not develope normally) were not strong enough to work.

This is just my story, I don't want to scare you, but I think it's important to know that there is a chance that something horrible could happen. My advice to you and your family is to find a doctor at U of M, make sure mom takes it easy and to just pray for the best.

Tyson was my first son, my second son Jaxon was born in 2006 and is the picture of health as well as the light of my life. My strong belief is that everything happens for a reason, sometimes it's just hard to see what the reason is.

My nephew had this. His left lung was diagnosed as totally atrophied and his right had developed to 30% capacity. He was whisked away for surgery, put on a type of dialysis machine called an ECMO (developed by a UMich doc, so Ann Arbor had one of the few in the country) and was in Neonatal ICU for the first two months of his life and then on oxygen for over a year. His gastro-intestinal system was out of whack and he had a difficult time gaining weight (plus he could hold very little food down).

This was in 1984. He's 24, just earned his Masters and is a father himself. Imagine what 24 years of neonatal advances have occurred since this time when he had a 20% or less chance of surviving! Now the survival rate is up to 80% or above.

Check out http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/001135.htm
which explains the whole thing.

And here's a really good page from the University of Virginia that will explain the challenges the child may face post-surgery (specifically mentions ECMO):
http://www.healthsystem.virginia.edu/UVAHealth/peds_hrnew...

Just keep in mind: the odds for survival are in your favor. Pediatric medicine has made great leaps since my nephew was born and he got through it fine.

here is a great support site for cdh families www.cdhsupport.org ...can also be found on facebook http://www.facebook.com/Dawn.Williamson.PERSONAL#!/group....