Diaphragmatic Hernia Please Help

[john911]

This is our second pregnancy the first pregnancy that we had ended in miscarriage.
My wife is at about 21 weeks. We went for our second ultrasound and it was noted that the stomach is high
up in the chest cavity and the heart is pushed over to the right side. It says that Diaphragmatic Hernia is a
consideration. It also notes everything else is normal. Our doctor who is a midwife told us we will have to
deliver the baby somewhere else, because there are insufficent facilities here locally. She referred us to a
specialist who specializes in sick babies and mothers and she told us it is to early to know and the baby
is still in gestation. She has seen cases where it went back to normal and told us it is to early to worry.
I also spoke to my cousin who is an obgyn and she said that it is possible it could go back to normal too.
We have another appointment next week and the wait is hard. Anyone know about this? I know it is pretty
rare and I have done research I am looking for thoughts-experiences not links.

One more thing the baby kicks alot and seems very active. I hope that is a good sign.

Thanks

[john911]

.

[john911]

Thank you for your answer sir. My wife just had blood drawn to check for diabetes, lupus, thyroid, and a torch panel. They did pathology on the placenta and we are still awaiting the results of both. Our next appointment is in five weeks. She doesn't want a autopsy done so there is not much I can do about that. The second ultrasound found no other abnormalities, but our doctor told us either there were multiple anamolies or some kind of infection. Neither of us have a family history of anything like this. So is it possible that it was hereditary? I mean wouldn't there be a history in one of our families? Our doctor said there is nothing pointing toward the fact that we can't have a healthy baby. I have low testosterone. I saw an endo and he told me there is no problem after doing extensive blood work. I was told that this would have no effect on this situation is that true?

[Yao Sun, MD, PhD]

CDH can be associated with other problems, including genetic abnormalities, congenital heart disease, and a condition called "hydrops".  CDH as a solitary lesion is rarely responsible for fetal death, and other conditions such as the ones mentioned above or congenital infection with a virus or bacteria may have been involved.

[john911]

They said that the baby would not have died from the diaphragmatic hernia alone and that it probably meant that there were other problems. Is that true? I mean it seems to me that since there was pressure on the heart and lungs he could have died from complications.

[john911]

Thank you, however my baby died already and my wife delivered it. Everything on the outside appeared normal, but we didn't do a autopsy. We got the other ultrasound and it said the babys heart was not beating. So they induced labor and she delivered. Do you think we should get genetic counseling? We aren't going to try again for awhile though.

[Yao Sun, MD, PhD]

I'm sorry, but this is a topic upon which I'm not qualified to comment.

[john911]

Oh sorry also we have insurance, but money is still an issue. What are your thoughts on Kapiolani Medical Center? I want to go to San Francisco, but money may become an issue.

[john911]

Thanks we have another ultrasound coming soon to confirm wether or not it is or isn't

[Yao Sun, MD, PhD]

Prenatal diagnosis of congenital diaphragmatic hernia (or other developmental abnormalities of the chest/abdomen) is not always straightforward.  I recommend that you continue to work with your physicians to see if the problem can be better defined.  You can discuss with them the possibility of a second opinion if further imaging studies are still not definitive.

[john911]

bump

[john911]

Hello and thank you for your answer. I have family in San Francisco so if this is the case I may be heading there. We have another appointment with our doctor next week what should we ask for? Another ultrasound? A amniosythesis? or an MRI? I mean the surgeon we saw said it is possible the ultrasound was wrong and it is to early to tell as the baby is still in gestation. My cousin who works at kapiolani medical center in Hawaii said to get a ultrasound where they insert it into the vagina and send it to her so she can look at it. The doctors have informed us of the importance of it being delivered in a suitable hospital, but we are getting conflicting opinnions. The radiology report said the stomach was high and the heart was a little to the right. It said to "consider" diaphragmatic hernia. Your thoughts are GREATLY APPRECIATED.

[Yao Sun, MD, PhD]

You need to be seen at a center that is experienced in the diagnosis and subsequent management of Congenital Diaphragmatic Hernias (CDH).  Radiologists at these types of centers are more familiar with the prenatal findings consistent with CDH.  For example, at UCSF, we have a Fetal Treatment Center where babies with CDH are followed and discussed by Pediatric Surgeons, Perinatologists, Neonatologists, and Radiologists.

If your baby does have CDH, the baby needs to be born at a hospital that has pediatric neonatologists and pediatric surgeons available to take care of the baby and perform the necessary procedures.