End of life when it's your baby.

I came across this today: 

Baby Blick Only Made a 10-Day Stop on Planet Earth but His Very Presence Spoke Words That Will Last Lifetimes

It was something that hit me in an unexpected way. This entire journey for me has always been about life. But there was a point where I wasn't even sure that S would have one. I remember coming to this realization days after the big ultrasound that had started our whole mess. There was still so much that was unknown, and I didn't have any way of knowing for sure if S would survive. Even with an amnio, I wouldn't have known for weeks if she had some genetic anomaly that would have meant she wouldn't survive the pregnancy. I had no way of knowing that her medical issues didn't include something that would mean she wasn't going to live past the pregnancy. It was a very difficult reality to come to terms with, especially in light of the pressure that I was under. 

I've maintained for quite some time that knowing what I know now, I would never have gone forward with a contract with the intended family. However, I can't say that at the time when I signed the contract I was necessarily in the same mindset as I am now. At one point I didn't know for sure what I would do if I was to find out that my child, or a child that I carried was diagnosed with a fatal or life threatening condition. As a doula and birth advocate, I had read stories of women faced with this particular circumstance, but I had never been in those shoes myself. I would love to say that I knew that I would be able to make a decision in favor of what the contract read, but to this day I have not had that experience. 

Experience is a tricky phenomenon. Given knowledge, we can estimate what we believe would be the 'right' thing to do, or even fathom to project what we would do in any given situation. But when the time comes for us to experience such, often the route we take is not what we believed we would. I've seen this now firsthand, although I don't know that I would have believed it if my situation had never occurred. I've said that I would have gone forward with pregnancy termination if I knew for sure the baby would die, such as in the case of anencephaly or Trisomy 18. But when it came down to it, and I was faced with the prospect of carrying a child that I knew would die.. I don't know that I could have. 

It is heartbreaking to think about the prospect of burying your own child; even moreso when you feel as though you are the only one who wants him or her to survive. A call to perinatal hospice and a trip to a funeral home will leave even the strongest of individuals in a place crippled with grief over the potential outcome of such a sad situation. Even stronger is the challenge of 'what if they are wrong' and 'what if my baby is strong, and survives'. 

Little Zion reminds me so much of my S in the picture that his parents shared with The Blaze. For the first year of her life, I called her my little rhesus monkey because she was so tiny and bald. 

Zion survived. He fought for 10 days and passed peacefully with his family in a loving and supportive environment. 

If S had been handed a similar fate, would I have made a different choice? If her holoprosencephaly had been diagnosed before birth, would I have made a different choice? I can't say for sure, but my heart tells me no. Even if it meant putting myself under the emotional distress of carrying, caring for, and saying goodbye to her, I would like to say that I would have the same decorum and respect for life as these parents did. They gave their son the best possible, knowing that his life would be shorter than anyone hoped for. That is love. That is faith. That is what I strive for. 

S is still surviving. 20 months so far, and getting bigger and better every day. Sometimes they surprise us :)