Zachary, born 2001

Zachary is our first child.  He was born September 17, 2001 and weighed 6lbs. 10oz.  We knew he had HLHS because of a routine ultrasound I had when I was 23 weeks pregnant.  We were given the option to terminate but thought our little boy should be given a chance.  We chose the 3-staged surgeries and delivered him at Columbia Presbyterian Hospital in New York.  

When Zachary was three days old, he underwent his first open heart surgery.  There was a complication during surgery so he needed the modified Norwood which resulted in him having little bit of congestive heart failure.  This limited him in the amount of time he was allowed to drink from a bottle so Zachary was NG tube fed for eleven months. At first, I didn't want him to have tube feeding but realized we weren't going to be discharged from the hospital without it.  After some practice, we realized how easy it was to put in and use that it was no longer scary to us.

When Zachary was eight months old, he had the Hemi-Fontan.  There were some scar tissue issues and he had awful swelling in the few days following, so bad that he couldn't even open his eyes!  Regardless, he was discharged after six days!

When Zachary was two years old, it was determined he was speech delayed and needed speech therapy.  He received it for about eight months and started talking right away. Now, that's all he does is talk and talk!

Zachary had two catheterizations before his Fontan.  In the first one, they coiled two collaterals and in the second one, they stented his left pulmonary artery because it was narrowed.  The second one was harder on us since Zachary became a big brother and we had to leave his little brother with his grandparents while Zachary was in the hospital.  As a result of having a stent, they placed him on Coumadin which meant frequent blood draws which Zachary hated and was anxious with each one. 

At the age of three and a half year old, he had the non-fenestrated Fontan.  He did really well with this surgery and came back from the operating room off the ventilator!  He was groggy but awake the same day. His oxygen saturations went from 75% to 80% to 100% at his last cardiology visit.  He is doing really well and is starting preschool this year.

I can't believe all we've been through and how great he looks and is doing.  I am so glad to have all three surgeries behind us and to start living a more normal life with no scheduled surgeries looming over our heads.  What still makes me so angry is thinking back to that pediatric cardiologist who strongly urged me to terminate my pregnancy! I couldn't imagine not ever getting to know my sweet little guy!

Story by Zachary's mom, Jill - New York