We found out by chance that my baby has a congenital heart disease when he was 6 weeks old: Pulmonary hypertension caused by Pulmonary veins stenosis (which means that the vessels (4) that carry blood from his lungs to his heart are significantly narrowed and the blood is not flowing between the two as well as it should).
We were so so lucky to have caught it up early. Usually, this disease is asymptomatic and it’s not diagnosed until it’s too late. Even the doctor said that was a first in her career. She was surprised, because normally, PVS is caused by other heart disease or condition but my baby had none, wich is extremely rare. His heart was perfectly fine.
Since then, my baby had to do a lot of tests. He had echocardiogram every week or two, an MRI and a Cardiac catheterization to finalize the diagnosis of severe stenosis on 3 of his 4 pulmonary veins. . Both last tests required general anesthesia.
My baby would look fine and normal but his disease was rapidly progressing. From week to week, his pulmonary pressure was just getting higher and higher. I can’t imagine how his heart was still holding up and working very hard to compensate.
It was really scary not knowing what was gonna happen to my baby. I could see him struggling and yet he was still such a happy baby! Sometime, it would just hit me thinking that ultimately, my baby might not be here with us anymore and then I would cry. I knew how serious and lethal was the disease. The whole situation made me feel like a ticking time bomb. I even was trying to mentally prepare myself to let my baby go. I didn’t want to talk about my feelings to anyone. I was showing the strong calm mommy face. I wanted to cry and feel the pain alone. I didn’t want to cook or to clean the house, all I wanted to do was just spending every second with my beautiful baby and not care about anything else. My husband and I were really trying to stay positive, and we were ready to accept anything coming from God. We were praying a lot and we tried to live from day to day.
There is no cure and no treatment for my son’s disease. After two months of tests, the doctors agreed that surgery was necessary. The outcome of it is uncertain, but it was that or my son dying.
I don’t think that anyone of us were prepared for what was coming next…