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.
Despite enduring four heart surgeries and six cath procedures since birth, our daughter, ten-year-old Noah Bella has never let her Congenital Heart Disease define who she is. Noah has loads of personality: charisma, magnetism, strength, character, and an ever-present mindset to do the right thing. This has given her the desire and commitment to help other heart families. It was during her last open heart surgery at the age of five that she was able to comprehend how meaningful it was to receive a thoughtful care package from the Hopeful Hearts Foundation. She immediately took comfort in this gift and wanted to see other children like herself feel as special as she did.
Since her last three open heart surgeries in 2009, she has created Noah’s Festival of Life, a carnival-themed fundraiser for kids and their families in an effort to help heart families across the country with financial assistance. With the help of the Hopeful Hearts Foundation, she has been able to fulfill this dream of hers. Today, Noah’s Festival of Life is in its 4th year. She continues to be an inspiration and an example to many people on how to lift the spirit and make a positive difference in the lives of heart families throughout the country. Noah’s mission is to help as many heart families in need by providing financial assistance for such expenses as travel, lodging, food, hospital parking, as well as care packages for families during their child’s hospitalization to aid in comfort and healing.
If it’s not stressful enough to see a child undergo complex heart surgery, the additional burden of having to pay for these expenses during this difficult time is insurmountable for many. As a heart family we are doing everything we can to ease this strain and allow these families to focus all their energy on their child.
Our twins, Aiden and Madison were born at The Children’s Hospital of Philadelphia in September 2012 at just 31 weeks gestation, both with critical congenital heart defects.
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.