Iry Lafleur

We were newly weds, and this was our first pregnancy. We had just found out that we were having a boy, and it never crossed our mind that anything would go wrong. We were healthy young parents. Then at 28 weeks pregnant that all changed. During a routine sonogram, they found that Iry's left side of his heart look very small. I still didn't think anything of it. Okay so he has a small left side, big deal. Then my doctor sent us to a specialist right away. Okay now I was freaking out. The doctors, and many specialist we had seen diagnosed it as Hypoplastic Left Heart Syndrome.

At forty weeks and four days Iry LaFleur was born. And exactly like I was told, he was rushed out of the room before I could hold him. I did get to look at him though and he looked wonderful, healthy, and perfect.

Looks can be deceiving. About two hours later the cardiologist let me know that Iry would have to be transferred to a nearby children's hospital because they could better care for him. I convinced the transport team to wheel him in so I could see him before they left. That was one of the saddest days of my life. My first up close glances of my son, and he was in a contraption that looked like a mini-space shuttle and had monitors, oxygen, and IVs. I begged in sobbing tears to let me hold him, but they couldn't. I got about five minutes then he was taken again. My husband went along to stay with him, and against doctors recommendations I left a few hours later (once I could feel my legs again) to be with Iry.

At the children hospital the doctors told us that his heart had a small left side but they believed it was large enough that he wouldn't need the Norwood surgery. He did however need a surgery. When six days old, Iry had his first heart surgery. He had an aortic arch repair. He recovered wonderfully, and a month later we got to take him home for the first time.

For two months Iry was home, and we did everything a normal family would do. I enjoyed him so much and had so much fun with him. I thought it was all done now, he was fixed, he would be fine.

Then one horrible day, Iry turned completely blue and his heart stopped. My husband and I were frantic to say the least. However we somehow remembered the video we watch two months earlier about infant CPR and started doing what we remembered. He came back, then stopped again, then came back. This happened three more times before the fire truck got there, which was amazingly fast.

Iry was rushed to the children's hospital where he had his first surgery. Iry continued to turn blue and stop breathing every time he would get too upset and cry. After doing a heart cath. They found out that because of the two holes in his heart his lungs were filling with too much blood and his heart couldn't pump it fast enough so it just stopped.

Iry immediately had a VSD and a ASD repair, and also ballooned his aortic arch. He recovered quickly and was home in about a month and a half. But has returned many times since with lung problems. Iry now has bronchial malasia and has to be on continuous oxygen, and has a g-tube that he gets most of his nourishment through.

Iry is a fighter. Iry is alive. And for this I know that we are blessed, lucky, whatever you want to call it. We have been out of the hospital for a month now. But every time he cries my heart drops. Is this it? Is it happening again? When I feel him breathe I wonder, will this be his last breath? The doctors can't say for sure if he will need more surgeries, his heart and left lung are still complicated. But until then, I will cherish every minute I have with him, and will continue to fight with him for his life.