On August 24, 2010, Chris and I returned to the Maternal-Fetal Medicine clinic for Chorionic Villus Sampling (CVS), a test to analyze chromosomes much like Amniocentesis. I was just shy of 14 weeks pregnant. Everything was going as planned. Anxious parents - check. Nurse reviewing the procedure for informed consent - check. Preliminary ultrasound to check baby's position - check. Then the technician left to get the Perinatologist for the actual test.
The technician and Dr. Pollard spent a good deal of time looking at the ultrasound, speaking in hushed but not alarmed tones. Chris and I thought nothing of this; we were just enjoying watching our baby on the television screen, seeing the movements and that little flicker of a heart beat. It wouldn’t have occurred to us to notice that the heart was beating on the wrong side of the baby’s chest with the stomach next to it – something we are accustomed to seeing now.
Dr. Pollard turned off the machine and looked into my face with his kind eyes. He said, “What we are seeing here with your baby is worse than anything we were hoping to determine by doing the CVS. Your baby has a Diaphragmatic Hernia.” Chris was sitting on the chair next to me. Our sonographer and nurse were standing just behind him looking sombre. The room was dimly lit and large. All of these details I remember even though I felt locked into a tiny little space with only Dr. Pollard’s gentle voice in it.
Congenital Diaphragmatic Hernia (CDH) is when the diaphragm forms with a hole in it so that the contents of the abdominal cavity can move up into the chest. The most dramatic implication of this is that the lungs cannot develop properly when their space is taken up by abdominal organs growing in the chest. There is a wide variance in the severity of diaphragmatic hernia – babies tend to do better if the hole is smaller, if fewer abdominal organs move up, if the liver remains below the diaphragm, if the organs move up after the lungs have had some time to develop. As well, half of CDH cases have co-morbid anomalies of the heart, kidneys, or chromosomes which impact the baby’s prognosis.
What they could see in our tiny baby was the stomach and intestines growing in the left side of the chest with the heart pushed over to the right side. We were told that day that babies who develop this defect prior to the second trimester – as our baby had – had a very poor survival rate because the key gestational stage for lung development has yet to even begin.
Dr. Pollard spent about 45 minutes explaining things to us, answering our questions, showing us on the grainy black-and-white ultrasound what indicated our baby was so sick. We were given the choice of trying to go ahead with the CVS that day, even though it would be difficult because of the position of baby and placenta, or going home to process and coming back in a few days for amniocentesis. Chris and I were blank. It was like my thoughts and feelings were swimming around in some far off land, completely inaccessible to me. There were no words and I couldn’t make the simplest decision. The doctor, nurse and sonographer left us alone and I finally cried. I wanted to go home. I wanted to go home and climb into my bed and wake up to some other reality.
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