Right after finding out about my son’s heart defect, I was in utter despair. I walked out of that initial appointment thinking my baby was going to die. Either by aborting him at 24 weeks or as soon as he was born. I had no hope and I had no one to turn to who could offer me hope.

I had to wait 3 weeks before the pediatric cardiologist from another city was able to come and see the fetal echo images. He met me and my son’s dad in the waiting room and introduced himself to us. He stood right behind the sonographer and directed her to take very specific images during the fetal echo. Not giving up until he saw exactly what he wanted to see. When he saw all everything that he needed to see, he told us to follow him into a consult room just down the hall.

My heart was in my throat. Would this be the second worst day of my life or perhaps this would be the day that gets me through the rest of my pregnancy without going crazy.

He said down in the corner, while I sat on the bed and my baby’s dad on a stool beside the bed and he said that yes, my baby’s heart was not developing as it should. The left ventricle was small, too small to be able to pump blood to the rest of the body. So, unless his heart grew larger in the next few months, he would need a series of 3 open-heart surgeries. He grabbed some paper and drew out a defected heart. He showed us how each of the surgeries would alter the blood flow so that eventually the right ventricle would function as the sole ventricle. He would be turned into a single ventricle baby. He told us that he would need to be born in Saskatoon. He would have another echo within hours of being born and then flown to Edmonton within days. He would need his first open-heart surgery soon after he arrived there.

After that it would be very important for him to put on weight and not get sick. Illness could be life-threatening to him. The faster he gains weight, the faster he could get the 2nd surgery, hopefully around 6-8 months.

After that, he can be like a normal baby, then he will need his last open-heart surgery at around 3-4 years old.

‘Many, many kids live normal lives with just a single ventricle.’ 

And that single sentence changed my entire view of this situation. He had a chance of living a normal life. Whatever normal meant…but I would take it. Each surgery had a very high success rate of 85-90%, but each surgery had major complications. He didn’t talk to us about that because…well the look on our faces said it all. We were maxed out on information.

He gave us the contact info for the cardiac nurses that he worked with and a pamphlet on some funding since this baby was going to need multiple ambulance rides.

I went home that day with my head held high and my heart feeling lighter. I could actually think about my baby surviving. I wasn’t thinking about when he would grow up and get a job, but I was thinking that he would be able to grow and learn how to walk and play and experience some childhood things.

Don’t get me wrong, I was completely destroyed that he had to undergo so much trauma as such a tiny baby, but I would be with him, beside him. I would be his voice because he was too little to have one.

My role as a mother would be vastly different than other mothers. Although all I wanted was that same journey as all those other ones, it just was not going to be like that. I would spend the next few months grieving that life that I wanted to have.

But I couldn’t change what was happening and I had to do what I needed to do. Because as every parent of a medically complex kiddo will tell you…. I wasn’t given a choice, I just put one step in front of the other.