original post date – July 22nd, 2011
Our son has what is known as hypoplastic right heart syndrome. We are looking at a lot of testing in the near future to figure out what our exact situation is.
Our current best case scenario is that when he is born, he will be taken into his first of 3 open heart surgeries. 1 at birth, 1 at 3 months, 1 at 4-5 years. If we are lucky, that will be it. Some of the children with this heart defect will require a heart transplant sometime between the ages of 15-30.
I’m terrified.
I can feel him stretch, and kick, and wiggle around just like a normal fetus. But he will not be able to survive after birth without serious interventions and a likely long stay in the NICU.
We are summoning our courage. We will learn all we can. We will prepare. The road will be rough ahead, but we have to find the strength to be guides to our daughter and to our son. We have to teach them strength and courage and love.
To my son -
We love you. We will be your strength and comfort. You will never be alone. We will have you and hold you. You may be in the hospital for a while, but you will come home. You will grow. You will crawl. You will walk. You will never play football, but let’s face it…we knew that already. You will live a normal life with a few extra doctor visits and a few surgeries. We will get through this.
