In January of 2007 Lucas was diagnosed via utero with Hyploplastic Left Heart Syndrome. We were given three options before his birth – one was a procedure of three palliative surgeries that he would need to survive. Lucas had open heart surgery at 3 days old, a second open heart surgery at 4 months old, and his final open heart surgery at two years old to repair the half a heart he does have, all performed by Dr. William DeCampeli at Arnold Palmer Children’s Hospital in Orlando. He has had many interventions since birth, his last intervention was a stent replacement in February of 2016. He also has a blood disorder that causes his red blood cells to not break down easily. CHD is lifelong, there is no fix or cure, and its care is complex but there is hope. Lucas is doing amazing today, he enjoys to live life to the fullest and does not let his CHD hold him back. Our family is active and we advocate for the CHD community to support families just like ours and raise awareness. Lucas has visited D.C a few times to advocate for CHD and plans to continue having his voice heard! Together we can conquer CHD!
We found out that our fourth child was going to be born with a heart defect when we learned that his twin had miscarried. Caleb was diagnosed with Tricuspid Atresia and Double Outlet Right Ventricle that resulted in a hypoplastic right ventricle. Caleb was born at U of M Mott Children’s Hospital and had his first surgery at two days old. Things were pretty rough the first week and it was decided that he needed another surgery to replace a shunt a shunt that wasn’t working for him. One week later, he got some new plumbing. After the second surgery, he was stable, but still unable to come off the ventilator. It was determined that the left side of his diaphragm was paralyzed, so the next week, he had surgery to hold the left side of his diaphragm down. He was finally able to come off the ventilator, but he was still in heart failure. After about two months in the hospital, it was determined that Goldilocks needed another tweak to his shunt. The first one was too small, the second was too big and the third was just right. We were able to go home 10 days after downsizing his shunt.
Caleb did very well with his second stage surgery at 5 months old. We struggled with feeding issues, but were finally able to eliminate the NG tube when he was nine months old. He rocked his Fontan surgery at 2 1/2 years, coming home in just 7 days. We joke that he is getting better at having heart surgery.
Now, Caleb is doing amazing! He is a very strong, active and happy six year old. He loves dirt, mud, trucks, and destroying things. He is in kindergarten and loves gym and recess.
Aiden was born with an isolated left pulmonary artery and right aortic arch. He had his first, and hopefully, only, open heart surgery at three weeks old.
Madison had Tetralogy of Fallot with pulmonary atresia and multiple major aortopulmonary collaterals (MAPCAs). She had her first cardiac catheterization within 24 hours of being born. She has had two open heart surgeries (MAPCA unifocalization, April 2013; VSD closure and conduit replacement, December 2013). She will need several more catheterizations, as well as additional heart surgeries as she gets older.
Our “miracle twins,” now 20 months old, have been through more in their short lives than any child should. Between the two of them, they have had three open heart surgeries; five cardiac catheterizations; one eye surgery; three hospitalizations for illness; numerous echocardiograms, x-rays, lung perfusion scans, barium swallow studies, and other tests; many, many doctors’ and physical therapy appointments; countless prescriptions; and more than $15,000 in out-of-pocket medical expenses. In addition, last fall we learned that Aiden had a brain injury called periventricular leukomalacia (PVL) and cerebral palsy, most likely a result of being born premature with a CHD.
However, to look at our kids you would barely notice anything is different about them. They are beautiful and happy and are making incredible progress! Aiden has high muscle tone in his legs and feet from his PVL, requiring the use of orthotic braces, but he is walking. Madison had vocal cord damage after her first open heart surgery and her speech was delayed for a while, but recently scored above average in communication in a developmental assessment.