Jacob - born 1998
Jacob came into our lives on March 3, 1998. About an hour after his birth, the NICU doctor told us that he had a heart murmur as well as an infection which required him to be under an oxygen mask. We were told that it wasn't serious but when I finally got to see him, I wasn't allowed to hold him. I held his hand and cried happy tears. When we got back to our room, we were told that a Pediatric Cardiologist wanted to see us who later told us that he had Hypoplastic Left Heart Syndrome. I looked at my husband and saw the same terror in his eyes. We were told that the odds of survival weren't good. Our world was collapsing around us.
We were informed of the three options and chose the 3-staged surgery. On March 6th, Jacob had the Norwood at WMC. He had no major complications and everything went well. I wasn't able to breastfeed him as the doctors felt he would not get enough calories and would exhaust himself trying. After two days of spitting up, Jacob was diagnosed with reflux requiring him to have a NG tube. Jacob was discharged April 1st and about 3 months later the reflux stopped but we continued with the tube feedings at night to help him gain weight.
Jacob had the second surgery on November 2nd and the third surgery in April of 2002. Both surgeries went well. To this day, Jacob will tell you the hardest part of the whole experience were the drainage tubes being removed. (We learned afterwards that other hospitals give pain medicines prior to the removal of the tubes. So, check with your hospital/doctors/nurses before your child has the Fontan and ask what they give to the kids prior to the removal of chest tubes as not all hospitals medicate the kids. If you'd like to know which pain meds to ask for your child, feel free to contact Little Hearts.)
Jacob has received both PT and OT and in 2004 was diagnosed with ADHD. In 2003, he got his wish granted by Make-A-Wish to go to Disneyland in Florida. He loved it!
Jacob is a happy, thriving, and active kid. We thank God for every second, every day and every year!
Story by Jacob's mom, Rita - New York