She was even more beautiful than I imagined.
Forgive me, Amelia, for I was frightened I wouldn’t recognize you. But in reality, you looked just like me.
Amelia had bright blue eyes and quite a bit of white blonde hair on the sides and back of her tiny head. Jack had more hair than we knew what to do with, and because of her condition, seeing Amelia with hair was unexpected yet comforting. It was obvious she was still our child. And furthermore, she reaffirmed my thoughts that it is indeed possible for Tyler and I to have blonde-haired, blue-eyed children. :) It wasn’t until a bit later that we realized her nose is a combination of Tyler and I’s – she had my Greek bump, and a bit of Tyler’s hook and cute crookedness at the base. (I’m deeply sorry for this, Amelia!) Yes, she was indeed our baby.
They placed her in my arms, all bundled up in a white hospital blanket. She had two pink hats covering her head. Tears came to my eyes as I realized what a miracle she was to be here with me, alive in my arms. I’d waited so long for this, and she was finally here. She only had a diaper on, and upon further inspection her body was perfect, from her strong shoulders down to her little narrow feet. Her reflexes were just like a normal newborn’s, and my favorite thing to do while cradling her fragile body was hold her hand. Sometimes we’d whisper we loved her and she would squeeze so tightly on both Tyler and I’s fingers; perhaps this was her way of telling us she loved us, too. Her blue eyes were blind, but not vacant, and she could most definitely hear her mama and daddy’s voices. Her smell was deeply comforting, and quite unlike any other newborn I’ve smelled. Words escape me to explain it, but I hope I’ll never forget it. She meowed like a kitten, and would also let out audible squeaks in place of cries.
It was a strange feeling knowing that my job then as a mother was solely to comfort and hold her. She didn’t need to be fed, and her diaper was changed only twice a day or so. I just got to hold her and love her for as long as she was with us. Knowing our time was limited made it very difficult to take care of myself and my own needs. I didn’t want to miss even one yawn, one squeak, or one nose scrunch from my baby.
There’s one part of her story that I want to be clear on: Amelia was intubated, which means immediately after birth they placed a tube down her throat to help her breathe. Had they not done this, her life may have gone a significantly different path, and she may have lived longer or shorter. She also had heart monitor stickers on her chest, and wires in every nook and cranny. One hand was completely wrapped up with a monitor of some sort (pulse monitor, Tyler says), and the other had an IV in it. To have her hooked up like this was hard, but was a price we were willing to pay.
Knowing the eventual outcome of Amelia’s situation, we tried for several months to make organ donation possible. It isn’t usually possible (only 2 other cases found) with anencephalic babies because though they lack a full, functioning brain, they have a brain stem with remnants of brain activity and cannot technically be declared brain dead like a person in a coma and/or on life support could be. This means you cannot recover their organs for transplant while they are still alive. But through many people’s efforts, we were able to find an alternative: donating her organs after cardiac death.
We met with dozens of doctors and staff from the California Transplant Donor Network and participated in meetings and phone calls to find a solution. All of the wires and IVs and monitors she had were to sustain life until potential donor recipients (essentially, matches) were found.
Fast forward a few hours later. Tyler and I were able to give her a sponge bath (she was very calm and seemed to love it!), and dress her in a beautiful pink dress my mother made. At 7pm, with Jack, my parents and Tyler’s parents present, we were able to give her a name and a blessing. (As members of The Church of Jesus Christ of Latter-day Saints we use the power of the priesthood on earth to give our babies an official name and a blessing after they are born. This normally happens in church a month or two after birth, and is separate from a baptism. Children have the opportunity to be baptized at the age of eight, which we believe is the age of accountability. We believe young children like Amelia who die before the age of eight are not held accountable for their sins, and are saved in heaven. Read more about eternal families here.)
Because we were given the gift of time, both of our parents were able to hold Amelia. After discovering she had anenecephaly five months ago, initially I didn’t want anyone, even family, to see her when she was born. I knew my time with her was limited and I felt it was most important for Tyler to keep her all to ourselves. I felt this way until I saw how big of an impact she made on those around us. There’s something incredibly reverent about an angel baby who is sent to earth for so little time. I feel so blessed she chose our little family to come to, and so honored (and frankly, intimidated!) to be her mother, for I held a perfect spirit in my arms. So many friends, family, nurses, doctors, transplant staff, and even strangers cared about our situation – it still amazes me how many of you read this blog. I can’t explain why our situation or our daughter was different from others, but there was a definite peace felt in our hospital room. There was never any panic or fear, though death was at the door.
Tyler and I want to give a heartfelt thank you to all of the nurses, doctors, transplant staff, and our kind photographer who stood by us, hour after hour. I know it isn’t easy to watch, and there are no words to give that truly comfort. But just being there and standing by us in that lonely hospital room made a difference.
After our families left after 8pm, we snuggled and cuddled with miss Amelia. Angels were all around us. As visitors came and left, I could feel a calming peace. We listened to the Mormon Tabernacle Choir’s This is the Christ cd, and relaxed for the first time. She was to be extubated (off oxygen) at 10pm, and we didn’t know how much time we’d have with her after that.