AJ’s CDH Story | From ECMO to Thriving Athlete

Our CDH journey began at IWK Health in Halifax, Nova Scotia. During a routine ultrasound at 16 weeks pregnant, we learned that our baby had left-sided congenital diaphragmatic hernia (LCDH).

His prognosis was poor, and we were overwhelmed with confusion and fear. We had never heard of CDH before and had no idea what the diagnosis meant for our baby or our family.

As the months went on, more difficult news came. An MRI showed that AJ’s liver had moved into his chest. It appeared that his left lung was not functioning, and doctors believed only about 80% of his right lung was functioning. We were told that AJ would likely have asthma and probably would not be able to participate in sports, but that he could survive.

On September 6, 2017, AJ was born.

It quickly became clear that his lungs were not his biggest challenge. His heart began to fail, and he was immediately placed on ECMO.

AJ fought.

Within just five days, he began showing improvement and was able to come off ECMO. He then underwent repair surgery, which was successful.

Fourteen days after he was born, I held my son for the very first time.

AJ continued to fight and grow stronger every day. He eventually became strong enough to come home just before Christmas. As we arrived home, the song “I’ll Be Home for Christmas” was playing—a moment we will never forget.

AJ came home with a feeding tube, but with time, he pulled it out himself. We decided to try oral feeds, and he did incredibly well. From there, he continued to grow and thrive.

Today, AJ has two strong, functioning lungs and no major health issues. And despite being told that he likely would not be an athlete, AJ has proven that he can do far more than we ever imagined.

He is an incredible athlete, and hockey is his favorite sport.

CDH is a journey no parent ever wants to take. But once you find yourself on that journey, you hold on to hope, love, and the strength of your tiny hero.

AJ taught us what it truly means to fight, to believe, and to never underestimate what these little ones are capable of.