What made this a week to remember was the news we got on Tuesday. We had a specialized ultrasound of our unborn baby's heart, called a fetal echo. Since our first child was born with a rare and complex set of heart defects (truncus arteriosis, truncal valve insufficiency and stenosis, interrupted aortic arch, ventricular septal defect, and PDA), this has been a routine at 20 weeks for each of our pregnancies since. Always before the news was good.
This week we learned that we are having a little boy, and that he most likely has two complex heart defects: tetralogy of Fallot and pulmonary atresia. (Follow the links for photos and detailed explanations of each.)
Both sets of heart defects are serious and complicated, require multiple surgeries to manage, and are associated with a chromosome abnormality called DiGeorge Syndrome or VCFS. Elli tested negative as an infant, but we've since learned the test has a 5-10% false negative rate. Since she's always the odd one, we wouldn't be at all surprised to learn that she really does have the syndrome after all. We're highly suspicious of something genetic since the odds of having either one of these sets of defects is 1 in 10,000.
The odds in our family are 1 in 2.
Anyway, this news changes a lot of things. My OB and I agreed that I need to change my delivery plans and move to a hospital equipped with a newborn intensive care unit and staffed by neonatologists around the clock. Our baby will be transferred to the children's hospital nearby as soon as he is stable for tests to determine the full and detailed extent of his situation. He may need immediate surgery -- we won't know until born. We do know that he will eventually need multiple surgeries, just like Elli has, to manage this condition.
On the one hand, I've had this feeling all through the pregnancy that we'd used up our healthy baby cards and it was time for something big to come around again. But at the same time, I never thought we could face something as difficult as Elli's condition. She had a really rough time, with many complications including the brain injury that affects her life every moment.
The doctors can't make any promises, but they tell us that usually these babies are stable at first and we shouldn't end up with the same kind of death's-door crises that we had with Elli. I certainly hope they are right, but I also know that putting all my hope in statistics and odds is false and will let me down.
My hope must be in something unchanging. We believe in an intelligent higher power who takes a personal interest in our lives. We believe He allowed this for His own good reasons, and that those reasons He may or may not choose to reveal to us.
I've found the article "Don't Waste Your Cancer" really appropriate to this circumstance we've found ourselves in. It's written by a pastor from Minneapolis, right before he underwent cancer surgery. But you can replace the word "cancer" with whatever issue you are facing.
I don't plan to write a lot about this situation here, though I will probably write about the medical experiences and that sort of thing.
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