Your baby has a congenital heart condition

Kyle and I went for our 20-week ultrasound excited to find out if we were having a boy or a girl.

We found out that we were having a baby boy and we were thrilled to hear the news! That day we went home and told our families the news. This was on a Thursday in April. On Monday I received a call from my midwife at work telling me that they had found something wrong with Mateo’s heart in the ultrasound, that she had never seen anything like it before, and that they were going to refer us to SickKids right away to get an echo of Mateo’s heart.

I was devastated and had tears running down my face while I called Kyle at work to tell him the news. After this call our lives began to change forever. A couple days later we heard from SickKids about going to an appointment for an echo. We drove to Toronto and for the first time walked into SickKids. The cardiologist did the echo and told us that Mateo had a condition called Tetralogy of Fallot with Pulmonary Atresia, and that they were not sure if he had a pulmonary artery. They said that they would have to do a 5-step repair when he was born. I cried all the way home, scared of what that meant for my baby, wondering if there was anything I could have done to prevent this from happening. Kyle lovingly assured me that there was nothing I did that caused this, the chances of a baby being born with this condition are 1 in 100,000 so we just got chosen to have the 1.

After that we got referred to the Mount Sinai high-risk 0bstetricians who did bi-weekly ultrasounds to make sure that our baby was growing and meeting his pregnancy milestones. The Obstetricians sent us to get an MRI because through the ultrasounds they saw that our baby had an arachnoid cyst in his brain. The MRI was long and uncomfortable at 6 months pregnant but we wanted to find out more about our baby so we went through with it. On a Wednesday afternoon our genetics doctor called me at work and let me know that in the MRI they were not able to see our babies left ear. I hung up the phone and in shock walked into my boss’s office to tell her the news. She kindly hugged me and reassured me that everything was going to be okay, and that there was a boy in her middle school that did not have an ear and that he was one of the most loved kids in the class.

We continued to drive from Niagara to SickKids on a biweekly basis to see different doctors until during one of our last visits the obstetricians told us that our baby had stopped growing and that I would have to be induced at 38 weeks. We were ready to meet our baby so we packed our bags and headed off to Toronto ready for the birth of our first-born. As we waited in the hotel room for the morning to arrive we made a video where we reflected on the journey that we’ve had so far, and the lessons that we had learned up to that point.

To help Mateo along his journey go to: https://www.gofundme.com/f/hakuna-mateo