My subsequent visits to that office will not be like those of a woman carrying a healthy baby. To me, it seems they will be more like counseling than medical appointments. We discussed timing my appointments around the slowest times of day so I wouldn't have to be surrounded by reminders that I'm not like the rest of the women in that waiting room. We discussed that there is no need for a glucose test, a strep test, or any of the like. We discussed delivery options, and how if I chose a vaginal delivery, they would not need to monitor Leila's heart in the process. I was prescribed more medications for anxiety, depression and sleeplessness, medications that would not be so easily handed out if I were carrying a healthy baby. My heart was crumbling, piece by piece, at each reminder that my pregnancy won't be treated like everyone else's. We listened to her heart beat. It was as strong as it ever has been.
Then came the conversation about organ donation. Since being informed of Leila's fate, I have thought a lot about this subject. I have researched and I have come across contradicting articles, some saying anencephalic babies are not suitable donors, and some saying there is hope. There are medical and legal issues that come into play, mostly concerning the definition of "brain dead" and whether anencephalic babies can ever be placed in that category. There are concerns of the properly functioning organs dying as the brain stem begins to cease. In most cases (and there have been few), anencephalic babies who are deemed worthy of donating are placed on life support in order to preserve those organs for the recipient. This would mean our time with her would be less than if we were to let her pass naturally, and this is only if she is born alive. There is still a great possibility of stillbirth. That was a tough bite to swallow. Potentially giving life to another child would mean me letting go of mine sooner, and even so, the chances of her being a suitable donor are slim. I pray that as I wait for my OB to discuss our situation with the Organ Transplant Team at OHSU, that I can find peace in either outcome, knowing Leila could save a life, and also that it just may not be an option. I will keep you all posted as more information comes my way.
As I left the office, rather than anxiety and sadness, I felt surprisingly calm. I realized that although I may not be the "normal" pregnant woman, anticipating her due date with a nursery full of stuffed animals and plush furniture, me and my baby are special. I have something no one else in that office has: I am carrying an angel, and one that could potentially give life after hers is over. To me, she is worth every emotion that I will feel over the next four months, and beyond, and I am thankful every day for the lessons she is teaching me. Lessons about compassion, about understanding, and of unconditional love.