Because of Barrett, We Love Harder

Because of Barrett, We Love Harder

By Katy Bone, Barrett’s Mom

Barrett was born 6/14/19 and died 7/12/2019, 28 days young. Because of Barrett, We Love Harder.

Barrett was a name my husband Tyler and I always knew we wanted to name a son if we had one. We knew right away what we would name our son when we found out we were having a boy when our daughter was around 9 months old at the time. My pregnancy with Barrett was great overall. Barrett did have a 2-vessel cord but we were assured that would most likely mean we would have a smaller baby but not necessarily anything else. Towards the end of my pregnancy, we would do stress tests, and at 37 weeks it was determined that it was safest for Barrett to come into the world. My labor and delivery were perfect with Barrett. I even fake pushed to ensure the photographer (Alexandria Mooney Photography) made it on time because we had previously said it would be a while. And then Barrett said nope, it’s go time, Mom. We got some good laughs at that.

After Birth, Barrett was able to snuggle with me, and I was able to study my beautiful new baby boy. I could tell his cry was weak and could tell the nurses were concerned as they took Barrett from me to assess him. I even asked if I could nurse him and was told no. I was devastated and still am that I never got to experience that with him. Barrett was born in the evening and was sent to the specialty care nursery to get a little extra support breathing. The next morning I was finally able to see him again and put my hand on him. I was told that we needed to transfer him to a higher level NICU. I was able to discharge and head to Mercy with my boy. He was transported via EMS due to needing a high level of support. When we got settled at Mercy, I was still thinking in my mind that Barrett needed a little more support and was even told we would likely be home in a few days. That never happened. Barrett got worse and worse. He was not doing well at Mercy, and it was determined he needed Children’s Hospital in St. Louis to be put on ECMO. The Children’s transport team arrived to prep Barrett for the transfer. Barrett was not responding to their machines so the transport doctor told Tyler, “We are stuck between a rock and a hard place. Barrett can stay here at Mercy, but he will die, or you can risk the transfer to Children’s where we will manually bag him the entire way.” Mind you, I had just given birth and was watching my brand new baby die in front of me. We risked the transfer to Children’s where Dr. Brad Warner (whom our last son Warner is named after) successfully put Barrett onto ECMO. When we arrived at Children’s, the halls were lined with so many nurses, doctors, professionals awaiting our boy. He is so special.

Barrett was at Children’s Hospital where the medical team searched for answers. There was so much back and forth, and very difficult meetings where we would be told there was nothing they could do. Then the next day would be something else. After many tests, the worst-case scenario was the last option. I will never forget the attending doctor at the time coming in to Barrett’s room to confirm his death sentence. She told us that Barrett had Alveolar Capillary Dysplasia. In short, a rare lung disease where the only cure is a double lung transplant. We were sent to the CICU in hopes Barrett could receive a lung transplant. Barrett died in my arms, and I will forever miss him and what could have been. The days were treacherous and all I can describe is torture and severe whiplash. He was a fighter the entire time he was in the hospital, and now I fight in his honor to keep his legacy alive. In my waiting, I will fight for him, until we are together again.

In Barrett’s honor, we created a nonprofit, Blessings for Barrett. We have a mission to support children who have lost a sibling by sending sibling comfort boxes nationwide and providing hospitals in the St. Louis and surrounding areas with sibling bags to support them “in the hour of loss.” Our mission is “Nurturing Hearts, Restoring Smiles: Supporting Children Through Sibling Loss.”

I miss Barrett every second of my life. He was a part of me (is still a part of me), we share DNA, and moving forward every day is a choice, and I do it for him. I miss you, baby boy.