I’m not big on pro-con lists. Or lists, in general. I’m more of a work through it in my head kind of person. But now we were faced with the task of deciding what to do in the face of some really bad news. Our baby had a heart condition that could not be fixed. It was life limiting. And we weren’t candidates for a risky procedure while I was still pregnant.
So we weighed all our options. I was 18 weeks.
- Voluntarily end the pregnancy. I was early. I could be induced and deliver naturally. We could see and hold him. We could make the decision to end his life now instead of dragging it out. This was our knee jerk reaction. And quite honestly could have been our fate if not for some unanticipated hurdles we faced. I’m not interested in hearing about a stance on pro-life. I can honestly say, there is no thinking straight when faced with this situation.
- Continue on with the pregnancy and choose palliative and hospice care should the baby survive to term. How could I carry a baby for 9 months, give birth, and not do literally everything in this entire world to save him. The thought of ignoring every last motherly instinct and allowing my baby to pass away was daunting. But this would allow us to maximize our time with him. He wouldn’t have to endure tubes and lines and risky painful surgeries. His time on Earth wouldn’t be spent being poked and prodded and cut open. We could love him. To death.
- Continue on with the pregnancy and choose aggressive and heroic measures. Consent to all treatment and surgeries with the hope that he would somehow survive. This could include being put on a heart transplant list. He would likely live in a CVICU for as long as it took for him to get a new heart. And then some. Or, he could pass anyways despite all the heroics we insisted on. We would have two children at home to take care of, and would have to split our time between the ICU, home and our jobs that of course would still be there despite the fact we had a baby who was dying.
- Continue on with the pregnancy, with the expectation that baby would make the choice for us, and pass peacefully before birth.
People keep telling me to stop expecting he will die. To stop planning a baby funeral, but to plan on him coming home. To plan for “a miracle”. Because “You never know”. I don’t want to plan on him coming home, because I just know in my heart of hearts, that he’s not going to. I don’t know if I believe in miracles. I believe in making informed decisions with the information you have. Yes, babies surprise us. Yes, sometimes they do better than expected. Lauren is a great example of that. She is thriving and I’m so lucky to be able to say that. Everything about her diagnosis was a gray area. There was a high degree of uncertainty. This has been different. There is no gray area. Our baby has critical aortic stenosis, coarctation of the aorta, and a severely dilated and poorly functioning left ventricle. The minute he is born, his heart with fail, and he will die. It will take more than a miracle to change our course.