The idea was born

“We will call it William’s Wardrobe!”
William’s dad, Alex told his mom, Stephany, as they stood on either side of the ICU warmer basinet, where their six-week-old son lay. They could only have dreamed that conversation would be the conception of this 501(c)(3) non-profit organization.

FROM THE BEGINNING

William was born at 9 lb, 6 oz, on March 25, 2023, without any complications during birth. He was precious, perfect, and peaceful the first twenty-four hours of his life. When we got to his 24-hour newborn screening to find out the oxygen level in William’s blood was dangerously low downstream of his heart, that’s when the world got scary and busy for our new little boy. The next morning, on March 27, right after 10 am, his first ICU doctor told us that William had a CHD (congenital heart defect). The transfer papers I signed said it was due to Critical Aortic Stenosis with a Bicuspid Aortic Valve.  

The following six weeks for William included four open heart surgeries and several catheter lab procedures to try and fix his CHD. Unfortunately, at three weeks old, the night before he was to start his healing journey from having the Ross Procedure, William went into cardiac arrest. He was revived and placed on ECMO (Extracorporeal membrane oxygenation) life support for the following weeks to try and get his body to the point of qualifying for a heart transplant. Things were looking up (and then back down again) the day William was put into his first infant bath robe. Up until that moment, he had been only covered with a diaper and draped with the tubes and wires keeping him alive.  

This is common for heart babies, especially those who have had open heart surgery. They need to be easily accessible for their care team and there aren’t many options for clothes that provide that. At six-weeks-old, William put on the infant robe that his Grandma Christi, had gotten for him before he was born. As the robe tie gently wrapped around his waist and the hood covered his head, it was clear to everyone in that CVICU room, that he was immediately comforted. That’s when we realized together: “We want every heart baby to have a robe.” We wanted other heart babies to feel that same comfort we saw in William.

On June 28, 2023, after a plethora of triumphs of William’s miraculous resilience, after every avenue to heal his body had been exhausted by his surgeons, doctors, and nurses, William had to say goodbye to this world. William’s wardrobe, made up of his thirteen different robes, were packed up, but for us, they remain as inspiration to help other babies in the CVICU.

In the months after William went to be with the angels, we actively worked on healing and learning how to carry the life-long grief of not having William with us. The two of us had the privilege to do some traveling, go on a grief retreat, and start couple’s therapy. Being a writer, I did some of my healing work openly, as I shared William’s inspiring story as a heart warrior and my own story as William’s mom in a “raw and powerful” blog titled, William’s Playlist (williamsplaylist.blog.)

But in the midst of these big steps in our healing journey, the idea and conviction behind William’s Wardrobe was never forgotten. We carefully handcrafted a board of directors and got to work building William’s Wardrobe from the ground up – motivated by a dream of helping not just heart babies like our William, but heart families and the ever-beautiful staff that give their heart patients the best chance at life.