A Beautiful Gift Wrapped in Heartbreak (Part 1 of 2)

written by Abigail Sacran, Founder of Spreading Sunshine 

The Birth of Sunshine

I didn’t know it at the time, but the birth of Spreading Sunshine began when I was expecting our second child. Our daughter, Lily, who was three at the time decided the baby’s name would be Sunshine.

How adorable, right? So, the baby’s nickname became Sunshine. We found out that Sunshine would be a boy and named him David. But for the rest of my pregnancy, we called our baby boy Sunshine. Sunshine was born, and Louis and I realized something was wrong. After a grueling twenty-hour labor, the blissful experience of the baby being delivered into my arms and laid upon my chest didn’t happen.

There are no happy birth pictures of baby, mama and daddy; instead, there are memories of a nurse grabbing Sunshine. Other nurses were called. There was an oxygen mask and suctioning, cautioned looks in our direction, and whispers. Lots of whispers.

I now know the cause of those anxious glances and low whispers. They knew. They knew our baby boy, the one for whom we had prayed, the one I dreamed of, our Sunshine, had Down syndrome. I’m not sure why the nurses or the on-call pediatrician kept this from us, maybe they could sense my complete exhaustion, or my increasing anxiety over his low oxygen. He was turning blue around his mouth when he cried.

I think they whispered because they didn’t know, they didn’t realize they were holding a beautiful gift – a gift I didn’t ask for, a gift I never would have thought I wanted.

Transferred to Le Bonheur Children’s Hospital 

Early the next morning, a pediatrician took my hand and told me and my husband, Louis, that they suspected David had a congenital heart disease and a cardiologist from Le Bonheur Children’s Hospital had been called. My face burned and my ears began to hum as she told me that my baby would need open-heart surgery. The tears began to fall. I prayed! Oh, how I prayed that the doctor was wrong, but the cardiologist confirmed the pediatrician’s suspicion. David was diagnosed with AV Canal Complete Heart Defect, and we knew we were facing open-heart surgery within the first three months of his life.

Louis went with David as he was transferred to LeBonheur Children’s Hospital for further testing and observation. I contacted my OB and begged to be discharged early so that I could be with David. My mom drove me to the hospital entrance, and Louis was waiting for me with a hard, plastic wheelchair (obviously not intended for a mama who had just delivered a baby).

I was sobbing as Louis wheeled me through the NICU halls, and we passed tiny hospital crib after crib. Finally, we came to Sunshine’s room, and there he was in his own tiny crib. The tears continued to roll as I settled into our room’s green recliner. I asked our nurse if I could hold Sunshine and she encouraged me to not only hold him, but to offer skin to skin. She put up a privacy wall, and helped me become comfortable holding my new baby boy. There were sensors and wires and IVs and tubes, so much for such a tiny baby. I sat in that recliner for hours, singing to David, loving him, and fearing what the future might hold.

The next morning…sitting in that same green recliner, Louis and I were greeted by a geneticist. I will never forget her words. They caused my world to come crashing down and left me completely broken. “Let me eyeball this baby,” she said as she took off David’s knitted hat. “Yes, I agree with the doctors. This baby has Down syndrome.” I blindly reached for Louis’ hand and the tears began to roll again. So many tears.

The Joys and The Blessings

Sunshine is four now. Sometimes, I wish I could go back and tell the whispering nurses that they don’t need to whisper or keep their suspicions a secret. I want to tell them to be excited about this baby boy with the almond eyes and the large gap between his toes.I want to tell them to bundle him up, deliver him to his mama, and tell his parents that their baby is going to be one of their greatest joys and blessings.

The older me, the me who can look back upon our diagnoses and the six-week NICU stay, wants to tell that mama in the green recliner to stop crying; don’t waste those tears on sadness or the fears of the unknown. This day, the one when your heart broke into a thousand pieces and your world forever changed, is one of the best days of your life.

Next week, Abigail will share a little more about their time in the children’s hospital and how the non-profit Spreading Sunshine was born.