Baker's Story

We found out we were pregnant with Baker in August of 2024. We were so overjoyed at the thought of growing our family.

 However at my 12 week ultrasound, there were some early indicators of potential abnormalities.  At our early anatomy scan around 16 weeks led to the discovery of a congenital heart defect. This was the moment our world shattered. We were so terrified and had no idea what this meant for us and our child that we wanted to badly. We were finally referred to Children’s Mercy Hospital Kansas City, and they took over my prenatal care. 

Around 24 weeks gestation we received a diagnosis of Critical Pulmonary Stenosis. We were informed of two potential outcomes. One being that his condition worsened in utero and he passed before birth, and two being that his condition stays stable and we then proceed with medical intervention. Baker proved to be a fighter and remained stable until my induction at 37 weeks. We were so fortunate that everything went according to plan with his birth. They were able to place Baker on my chest immediately for a few brief moments. Then they took him to get him cleaned up and prepped for the NICU. We were able to hold him one before time before they transferred him to the NICU. 

A week later after an unsuccessful catheter procedure, the doctors discussed open heart surgery with us, believing that this way the best option for him. The day before his surgery he had his first coding event. Delaying his surgery a bit due to some weird heart rhythms that were happening. Two days later the surgery finally happened and seemed to go smoothly. Dr. Gibson, Bakers surgeon is phenomenal and we trust him so much. That night after his surgery, Bakers vitals suddenly plummeted leading to a second code event where the medical team placed him on the ECMO life support machine. A week later he was able to come off ECMO and seemed to be holding steady for the next few weeks, however his recovery just wasn’t going as smoothly as we all hoped. 

On May 8, 2025 we made a joint decision to proceed with a secondary catheter procedure to place a stent to keep his PDA open, hoping that would allow for us to take him off one more medication. After his procedure, once he was settled in, we gave him a goodnight kiss, and decided to go get some rest ourselves. Unfortunately, that night he coded for a third time. CPR was performed for 30 minutes before we decided that this was becoming too much for his little body. In that moment we knew we had to let him go. We requested that stop life saving measures and within seconds Baker was gone. It was the most heartbreaking thing I have ever experienced. 

Through all the pain though, we also experienced so much peace in knowing that Baker is no longer suffering. We watched the cardiac team at Children’s Mercy do everything they could for our perfect boy and we are so thankful for the time we were able to have with him. This season of life taught us what a precious gift that time is. We are forever grateful to be Baker’s parents.