Every year, 100,000 babies don't make it to their first birthday because of CHD.

Nolan James Hill | Heart Warrior of the Week
We talked with Hannah Hill, mom to Nolan, who is a very brave CHD warrior who was diagnosed with not one, but four congenital heart defects. She describes how they found out about his CHD’s, the journey they’ve walked so far and how their small but mighty addition to the family has inspired them to never give up. This is our Heart Warrior of the Week!
Name:
Nolan James Hill.
Diagnosis:
Transposition of the great arteries (TGA), pulmonary atresia, ventricular septal defect (VSD), double inlet left ventricle.
Birthday:
February 6, 2017.
Was Nolan diagnosed in-utero?
He was not diagnosed in utero; he was born at 4:07 PM and I noticed his feet and hands were blue. I had mentioned it to the nurse in labor and delivery about 30 minutes after he was born, but she said it was normal and it just takes time for the blood to circulate. I wish I would have trusted my instincts, but I was a new mom and just brushed it off. Besides, I was thrilled just to be holding him. He was about 2 hours old when the nurse took him to do his checkup. It was now a few hours later and the nursery still hadn’t brought him back to our room. It was then that we received the devastating news – the pediatrician came in and told us he didn’t know exactly what was wrong, but it was definitely something with his heart. He was immediately airlifted to Vidant Medical Center that night at 11 PM and was airlifted yet again to Duke Hospital the following day.
How would you describe Nolan in a few brief words?
Nolan is the happiest child, especially having been through so much. He is resilient and such an inspiration to us.
How many surgeries and procedures has he undergone?
Six. First open-heart surgery at 4 days old, two heart caths at 3 and 4 months old, second open-heart surgery and third cath at 7 months old, and another cath at 1 year old.
Can you describe the above surgeries and why they were performed?
His first open-heart was the BT Shunt. This was a temporary fix with an artificial valve so that blood could flow to his pulmonary arteries.
The two caths were to increase blood flow and make his left pulmonary artery larger.
The second open-heart was the Glenn procedure – this was a permanent fix to do what the BT shunt was doing, but using his own arteries.
His third and fourth caths were to help his arteries grow bigger and stronger with increased blood flow to the lungs and body.
Approximately how much time has Nolan spent in the hospital throughout all this?
A total of about four weeks, with many doctors appointments and overnight stays in between.
Is Nolan on any medications as a result of his heart condition? Is it something he is taking temporarily or will he have to take it for the rest of his life?
Luckily, he is currently only on aspirin! He used to take Lasix but we have been off that for a few months now. The aspirin may be a lifelong thing or temporary, we haven’t been told by his doctors yet.
Does he face any restrictions in his everyday life?
Despite all he has been through, he does not have any restrictions at this point of his journey, which we consider to be a miracle! However, we are very nervous during flu seasons, of course.
Is there a need for any more surgeries?
He will need a third open-heart surgery between ages 2-4, depending on how fast he grows and how his heart continues to do. We will continue with lung profusion scans, heart caths, and seeing his cardiologists every 2 months or so until that time.
What challenges do you face as a CHD Family?
We worry when he gets sick, we worry that he won’t continue to develop or will have learning disabilities. He also has an eight-year-old half-brother who has been deeply by all of this.
What inspires you about Nolan?
He inspires us on a daily basis to never give up. We know in our hearts that he was put on Earth for a purpose and that he will live a fulfilling life serving our Lord and Savior. He is full of joy and happiness and is always laughing. He lives life just as any other healthy child would. We are so blessed to be his parents and couldn’t imagine our life without him.
About Nolan’s Defects
Transposition of the Great Arteries (d-TGA)
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