AJ's Story - Congenital Diaphragmatic Hernia (CDH)

During our 13-week ultrasound, we were told that our little one would be born with a congenital diaphragmatic hernia (CDH). AJ’s bowels and stomach occupied his lung cavity, and later, a small part of his liver moved up as well. 25 weeks later, AJ was born, intubated and transferred to the Neonatal Intensive Care Unit (NICU) at the IWK in Halifax, Nova Scotia. Immediately, his heart started to fail (which was not expected, considering his heart looked great during prior ultrasounds). We then found ourselves surrounded by many doctors, RTs and nurses with one goal -- to save our little boy’s life. 

AJ was immediately placed on ECMO and then transferred to the Pediatric Intensive Care Unit (PICU). Five days later, AJ’s heart function began to improve. He was now strong enough to undergo surgery to repair his CDH. He had his surgery two days later, and it was a success. 

After spending two months in the PICU, AJ was transitioned to an inpatient unit on high-flow oxygen. We stayed there for an additional 8 weeks before joining his older sisters at home, oxygen-free! Today, he is thriving with the assistance of a feeding tube. He needs no oxygen support. He is pure joy, a happy and sweet little boy. We love him so much.

2021 Update:

AJ was born on September 6, 2017. He had severe LCDH, and I was told he would not have a left lung. His right lung looked at approximately 80% working capacity. Shortly after he was born, his heart started to fail. He spent five days on ECMO and spent four months in the hospital.

Almost 4 years later, AJ is a happy, outgoing and energetic little boy. He has a highly functioning right AND left lung. He loves construction sites and can name every construction vehicle there is. He loves his older sisters. Aside from his scars and his smaller size, you would never know he went through what he did!

2024 Update:
To be honest, he does not fully understand what he has been through yet. He knows he spent time in the hospital when he was born but does not ask much about it. He is small, one of the shortest in his class, and sometimes notices this. It is hard to explain that a part of this is likely because he spent the first month of his life fighting to live. He is still on the normal growing curve, just not at the top.

Overall, his pediatric surgeon is in awe of his progress (he gets his team hockey card when we see her). It was believed he would be functioning with one right lung, but that was not the case. He does have an almost fully functioning left lung. He has accomplished so much more than they anticipated. 

He has a great sense of humor, and his teachers find him a joy to have in the classroom. He does find the academic piece challenging at times. He is in grade one at a fully French-speaking school, which may be a part of his struggle (where we are mainly an English-speaking family). However, he is improving with extra help and work at home.

The teachers and staff know about his CDH, but his friends and teammates do not know or fully grasp it. I am sure at some point in his life, most notably when his scars are noticed, he will be able to tell his story. 

As far as hockey and sports, AJ goes full out. He loves being active, and being outdoors is his thing. He loves riding his bike and playing with trucks. He went skiing for the first time this year and loved it!