cdh

My grandson was born with congenital diaphramatic hernia and only lived 2 hours. He only had 1/4 of one lung. I asked about a lung transplant and was told he was to young. How old do you have to be to get an organ transplant? I also don't understand why they didn't do fetal surgery. I know it is risky but it would have increased his chances from zero. What hospital do you feel is the best able to deal with this condition? He was born at Parkland in Dallas, TX.

[Yao Sun, MD, PhD]

Congenital diaphragmatic hernia (CDH) is still one of the most difficult conditions to treat from a surgical and neonatal standpoint, especially if the affected lung(s) are very underdeveloped.  In cases where the liver is up in the chest and the "lung to head ratio" is very small, survival rates are low even with the most advanced support such as Extracorporeal Membrane Oxygenation (ECMO).

Fetal surgery using a technique called "tracheal occlusion" is offered to only a small group of patients where the risk of mortality is very high based on the prenatal ultrasounds.  The UCSF Fetal Treatment Center is the most experienced in the world in offering this therapy, and they can be contacted for prenatal consultation for fetuses with known CDH.

Lung transplants have been rarely performed for CDH, but are not currently considered standard therapy at any institution.

[tricia831]

Thank you. I just don't feel that the doctors were upfront with us about his chances. We knew it was a severe case but had only learned about cdh when he was diagnosed. His lung, kidneys, intestines, everything was in his chest cavity. But they never told us how much lung tissue he had. In reading blogs of other cdh cases since his death I have heard the parents report all kinds of information that the doctors never gave us. They talked to us about cdh in general and we had already learned most of it on the internet. There was very little about his case specifically. It is so frustrating because we were so unprepared. We knew we would have a very sick baby but didn't expect him to have zero chance and only live 2 hours. Are doctors afraid to tell patients at least that the outcome is very bleak? Something to try to prepare for it instead of being hit by a brick wall.

[Yao Sun, MD, PhD]

I'm sorry that you feel frustrated by the prenatal counseling the parents received.  The information given by physicians to parents before birth is based on the data the physicians know by prenatal evaluation.  Unfortunately, prenatal data does not always accurately predict what happens at the time of birth.

If you and the parents still feel frustrated by the prenatal and post-natal experience, it may be worthwhile to try and arrange a meeting with the physicians who were involved.  It may also be helpful to contact one of the social workers who were involved in the case to see if they can help arrange the meeting and provide support to you and the parents.