December 21, 2012 – I don’t have to wait long today because I’m running late. It is the Friday before Christmas and traffic was terrible. I am meeting with the genetic counselor that helped us in May. Much of the time between May 7 and May 18 is a blur and I do not remember much of the information provided to us. We made the best decisions we could at the time, but now I have questions.
Keith does not think coming here and asking these questions is a good idea. He does not see how it will help me to bring it all back to the surface. I think he’s scared I’ll fall apart again.
During my post-op appointment with Dr. P in June she said that she could tell me a hundred times that I did the right thing, but it wouldn’t make it any easier. She was right. Over the past seven months I’ve known in my heart we did the right thing, but my brain won’t shut up with the questions.
What if we had waited and let nature take its course?
Should we have had the tissue tested instead of turning down the genetic testing?
Did we do everything we could have done?
I have to gain a better understanding of what happened so that I can quiet my brain.
I sit down for just a minute before “J” comes to the door and calls me back. We make small talk on the way back to her office. As we sit down she asks me if I would like for her to start at the beginning and I tell her I would. She explains everything that was found during the ultrasound on May 7, I ask my questions and we make a plan for my next pregnancy. I leave with my questions answered, my brain quieted and peace in my heart.
Here are the answers I gained that day:
- When a baby’s body is formed the cells “zip up” in the front and in the back. Our baby had a complete thoracic-abdominal wall defect. The body did not fully close in the front, leaving the heart and abdominal organs exposed. The ribcage formed leaving no room for the lungs to grow. (The lungs do not develop until the last weeks of pregnancy.) Even if we would have made it to term, the baby would not have been able to breathe. These defects could not be repaired because bone, unlike skin, cannot be stretched. There was nowhere for the heart to go or the lungs to grow.
- The cystic hygroma (sac filled with lymphatic tissue) was in the worst stage possible, forming down the spine and out from the neck. Even though a cystic hygroma can have a genetic cause, they think that in our case it was secondary to the thoracic-abdominal wall defect, and thus a sign that the baby was already in great distress.
- Even if we had made it to term, the baby probably would not have survived the trauma of the birthing process.
- At no point was our baby in pain.
- These problems are extremely rare and even more so combined. “J” told me she has seen three similar cases in her career. Ours was the only one she had seen with the combined defects. There is no medical explanation for why this happened.
- If we had chosen genetic testing and chromosomal abnormalities had been found, they most likely would not have been the cause of these problems. Also, there is less than a 1% chance of a future baby having the same abnormalities.
My next pregnancy will be considered high risk. Our plan is to have a nuchal scan at 11 weeks (the earliest they would be able to detect the previous problems) and anatomy scans at 16 and 20 weeks. I feel that medically I am in great hands. We know that ultimately God is in control and will “work for the good of those who love Him.” (Romans 8:28)
“He who began a good work in you will carry it on to completion until the day of Christ Jesus.” Philippians 1:6