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Wonderful Legacy Asante

10/31/2014-11/2/2014

 

Wonderful Legacy Asante, baby with anencephaly

WOW! What a journey. Wonderful is an amazing light being. He brought together so many people and inspired them to appreciate the beauty of now. This story is unlike any other you've read so far. This is celebration of acceptance, faith and love!

My husband and I went to our 1st ultrasound at 28 weeks, per request of our midwife, just to check in. The technician said she could not locate the head and called for assistance, 3 others agreed, but there was no main doctor to explain the results. My midwife called me later and asked what they had told me.

"Nothing", I said.

I asked what they told her and they told her they could not locate the skull bone and I needed a more powerful ultrasound. My general nature turned to fear and doubt.

I actually googled "baby ultrasound no skull" and this very site came up, it terrified me, although didn't have any diagnosis yet. The next two days were agonizing, and many thoughts swirling, I just wanted to know.

At the ultrasound appointment the doc and technician chatted briefly, said "there are the ears, the face looks normal" and that put me at ease. Doc left the room and we found out the gender, a boy!

She came back and said "I'm sorry to have to tell you this your baby has a condition called Anencephaly and it is incompatible with life".

My body surged with heat and I felt dizzy. I thought about his perfect face as the doc rambled on about it being too late for abortion in this state but I had options for termination. I stopped her and said this baby chose me and we will do this together, so move on to the next topic, organ donation.

I knew his body was coming for a reason. She didn't offer much information on that, but did force us to go to the genetic counselor (bad idea since I JUST got the news) and I went home to pray. I felt him kicking saying Mommy, we can do this.

We decided to name him Wonderful Legacy Asante and celebrate with him from this moment on without looking back. He was our pride and joy.

I had cravings for childhood food, rice krispy treats, flav-or-ice, pizza hut, funfetti cup cakes. I realized he wanted to taste all those goodies before he said goodbye.

I hired a doula who helped with my birth plan, I was able to have the hospital bend all the rules for visitors, decorating the hospital room, I felt empowered. I looked in to organ donation to see if he would be a candidate, signed up for the Duke research study on Anencephaly and I loved my boy to the max.

Wonderful Legacy Asante, baby with anencephaly

I went into labor Oct 30th, it was so intense, it caught me off guard. 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. I thought I was squishing his little head. We had no monitoring because it was suggested that would just unnecessarily alarm me. Because of the lack of skull I had to push even harder than with my previous child, 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.

MK and I agreed that if Wonderful was well enough to come home after 24hrs we would leave the hospital, but if his 02 levels began to drop we would wait it out there. Carolina Donor Services were in the building ready and waiting. 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 and asked the hospital again if they could provide us with a hospice nurse to monitor his O2 levels so that he could still have the option to donate organs. Unfortunately UNC just did not get this in place for us, 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. I wasn't prepared at all. I had just a few diapers, no wipes and a few outfits. He wore them all. He partied with us all night long and then snuggled between me and my husband for a good night together.

In the am he seemed hungry so I tried to squeeze out more milk for him. Then he started to show signs of O2 deprivation, luckily UNC did provide us with O2 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 were 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.

I thought it would be difficult and sad to pump my milk, 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.

This whole experience has been a huge emotional mashup of feelings both beautiful and painful.

What an honor to carry Wonderful! My grief is there but my happiness is greater, I know Wonderful came to bring blessings and remind people to enjoy every moment because even 42 hours can be a lifetime.

We are currently working on a documentary film about Wonderful's life lessons and how to transcend fear.

Maya & MK Asante

 

Maya can be contacted through the webmaster

 

Last updated November 10, 2016