Wonderful Legacy’s story, as told by his mother, Maya

Wonderful Legacy A. was diagnosed with Anencephaly at 28 weeks gestation (my first ultrasound). As soon as “not compatible with life” came out of the Doctor’s mouth I immediately thought organ donation, as I have an 8 year-old cousin on a heart transplant waiting list. I started researching everything I could, only to find out that babies with Anencephaly often times have a hard time donating because of their condition, but it doesn’t have to be this way, if you and your birth team are organized and on board ahead of time, your little one may be able to help someone else.

October 30th, 2014 I was induced and the induction wasn’t really working, so they broke my water, then contractions came intensely, but far apart. So his engagement and active labor were much longer than I expected. I was so scared he would die during birth that I cried the whole 4 hours of pushing. But once he came out, oh boy, I rejoiced! He let out a faint cry, they cleared his airway and he reached his arms up to me and kicked his little legs. I kept the placenta attached after delivery and that actually helped him so much, it was on for about 2 hours. He came out with a O2 level of 64 and quickly jumped to 98.
My husband MK and I agreed that if Wonderful was well enough to come home after 24 hours we would leave the hospital, but if his O2 levels began to drop, we would wait it out there. Carolina Donor Services (our Organ Procurement Organization) were in the building ready and waiting to assist with donation when the time came. We even signed all the final paperwork. They monitored him all night and he was doing so well! He even suckled a little bit and got some colostrum! Everything they said he couldn’t do he did, he responded to touch, light and sound. He never opened his eyes, but the flash of the camera made him close his eyes tighter. By the morning we were so excited to leave. We asked the hospital again if they could provide us with a hospice nurse to monitor his O2 levels at home so that he could still have the option to donate organs. Wonderful was a candidate for liver cell donation, heart and lungs for research. I wanted to donate eyes and heart valves too, but he was too small according to their standards. Because the cord was attached for so long all the blood was drained, so I was not able to participate in the Duke Anencephaly research study either. Unfortunately UNC (our hospital) was not able to get a infant home hospice program in place at the time of my birth, which meant no one was able to monitor his O2 levels home. This meant we would not be able to participate in donation, although I do think it will happen in the future, since we paved the way.

At home Wonderful flourished. He turned pink, he was breathing, and eating, pooped 5 times, peed on the bed. The next day Wondie started to show signs of O2 deprivation, luckily UNC did provide us with 02 tanks and Morphine for his transition. With O2 he did a little better, but we could tell he was making his transition. His heartbeat slowed and eventually we stopped the O2, he died at 12:42pm 11/2/2014. He passed away skin to skin on Daddy’s chest. It was beautiful to witness really, he was surrounded by family and love, prayer and song. At that point Wonderful stopped living on this earth, but his body was still warm and I knew the organic, well loved, fully formed organs could help someone else if only he had been monitored. I would not change the experience of taking him home and loving him though. I did however write a letter to my birth team and UNC hospital to make these changes for future families and allow them to bond with their children and family at home and still be able to participate in donation.

But the donation story is not over yet! I did get to donate my pumped milk and that has been such a blessing for us! I thought it would be difficult and sad to pump, but it actually boosted my mood and energy, it was something tangible that Wonderful allowed me to produce for a baby that needed it. I pumped for about a month and produced a gallon of milk for donation.