Maci M's Story

Updated: May 19, 2020

I was born April 10th 2017. No one knew anything was wrong with me. I breathed fast, but new babies do that. I had blue fingernail beds at the beginning, but my mom was told that was normal. I had cold hands and feet, but my mom didn't know the signs of CHD so she thought I was cold. I developed a cough, my mom thought I caught my big brother's cold. On May 14th 2017, I was breathing even faster than I was before, my mom asked the advice of her friend that is a nurse and she told my mom to call the nurse line. The nurse line told my mom to take me to the hospital, I was breathing 98 times a minute and had what they call retractions. My Mom and Dad took me the local hospital, and they brought me right back to a room. They said they thought I had a bronchial virus, and they did a chest x-ray. The doctor came back and told my mom to hold a tube by my face that had oxygen coming out of it, and she said to my mom that my heart was badly enlarged and she had to take me to the Children's hospital two hours away. My mom was very scared. An ambulance arrived and away we went.

When we got there, a cardiologist came to see me and did an echo. He told my mom, my heart was very sick, he needed to do some tests and he would tell her more. My mom was holding me and I became very grey, she yelled for the nurse, and the nurse grabbed me and ran to the Trauma Room. I needed to be bagged, the room filled with people. The Cardiologist came back and told my mom I had a Congenital Heart Defect called ALCAPA ( Anomalous Origin of the Left Coronary Artery Arising from the Pulmonary Artery) and I would need Open Heart Surgery within 12 to 24 hours or I would die, but in order to have that surgery, I would need to be flown to another children's hospital in Toronto Ontario. I was sent to the Pediatric ICU where they intubated me and started me on medication to help my heart pump, I was in Cardiogenic Shock. In the morning, I was loaded into another ambulance and taken to the airport , and put on a small airplane to start my journey to Toronto. My mom was scared and sad, she didn't know when she would see my dad or my 4 brothers again.

When we landed in Toronto, we were put in another Ambulance and made our way to the hospital. Once we got there, they said I would go to the Operating Room first thing in the morning. The next morning came and my lungs collapsed and I tested positive for a staph infection, my surgery was canceled. It would take 3 more days until I was stable enough to have the surgery to repair my heart.

On May 18th 2017 I spent 8 hours in the operating room, the doctors told my mom I would come out on ECMO (extracorporeal membrane oxygenation) as my heart was so sick, but I surprised them all and came out not on ECMO. My chest was left open for four days, two days after they closed my chest I had my breathing tube taken out, and my mom finally got to hold me after 10 long days. I got to leave Toronto on June 9th, but I had to stay at the children's hospital in Halifax NS until July 1st, as I had a lot of trouble with my heart beating too fast, and I needed to spend some time in the PICU until they could figure out my medications.

I'm now 3 years old, my heart function has recovered to almost normal they tell my mom. My mitral and aortic valves leak a little, but it doesn't seem to bother me. I take a beta blocker every morning and every night to help my heart. I see my Cardiologist twice a year, when I see him in July if everything looks good, I will finally get to graduate to yearly visits, my Mom says that's a big deal 😉

#CongenitalHeartDefect #ALCAPA #Pediatric #Survivor

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