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.