The information contained in this Web site concerns the diagnosis and management of a Congenital Diaphragmatic Hernia first discovered by ultrasound at seventeen weeks. All comments and viewpoints expressed are mine only. Keep in mind that technology moves at a rapid pace. The information provided here may be outdated by the time you read this. For this reason I have provided dates for your reference.

July 30, 1997 – My wife and I were both 40 years of age and well aware of the risks associated with having our first child at this late stage, so we were both a little anxious going in for the first ultrasound. Our anxiety was relieved somewhat when we saw for the first time our baby moving and kicking. The technician pointed out various organs and did her best to explain what we were seeing. At one point we got a very clear image of the baby with its thumb in the air, as if it was giving us a thumbs up signal. When the technician left the room, we were feeling pretty good, but we still hadn’t heard what we had come to hear—that everything looked fine. Then a doctor came in to do a final scan. We could both sense that something was different this time around.

The doctor concentrated on one particular area when he did the ultrasound. A few minutes later he explained to us what he was looking at. He told us that our fetus had a condition known as CDH (congenital diaphragmatic hernia). He explained how the stomach had pushed through the diaphragm on the left side and into the chest cavity, moving the heart from the left side to the right. He told us that it was a rare condition and that it was life threatening to the fetus. He also said that the condition had a twenty to thirty percent mortality rate. My wife immediately agreed to have amniocentesis performed to check for any chromosome abnormalities. The doctor gave us the number of a pediatric surgeon to talk to.

We were obviously devastated by the news. We went on the Internet as soon as we got home. We found a lot of helpful information, but a lot of what we found was conflicting and out of date. (Note: Cherubs did not have a Web site at this time.)

After a sleepless night we put together a list of questions and called the pediatric surgeon. Below is a list of the questions we asked and the paraphrased answers we received:

Q. What kind of quality of life would the baby have if we have the operation? Complications? Lung diseases? Physical limitations?

A. If the baby has enough lung tissue, we could expect to have a healthy baby with proper management. The lungs continue to develop up to ten years of age. Lung disease would be rare. Physical limitations could be overcome.

Q. What about feeding tubes? What other special care needs could we expect?

A. A feeding tube for the first year is a definite possibility. The child may also need oxygen for the first few months back home. There shouldn’t be any other special care needs.

Q. What other organs might be compromised?

A. Primarily the lungs only.

Q. What percentage of parents in a similar position to ours choose to terminate the pregnancy?

A. The minority choose to terminate.

Q. What is the best case scenario? What is the worst case scenario? What is the most probable scenario based on what we know now?

A. Best case is the operation will be successful and we will have a healthy baby with no complications. Worst case is the baby will not have enough lung tissue and will die shortly after birth. The most probable scenario is that the condition will require management for the first few years of life.

Q. What is the recommendation in the case of a chromosome abnormality?

A. Terminate the pregnancy.

Q. Is there any danger to Lynn (the mother)?

A. No.

In addition to the above, we also asked about having the operation in-utero. We were informed that the best chance was to wait until after birth. He gave us 50/50 odds with the in-utero operation and 70/30 odds if we waited. We both felt more positive about the situation after talking to the pediatric surgeon.

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