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.
Norah was born in 2009, seemingly healthy. At two weeks old she was hospitalized at Blank Children’s Hospital in Des Moines, IA for having had a UTI. She was referred to the University of Iowa Children’s hospital and diagnosed w Grade IV Bilateral Vesicoureteral Reflux. After a year of prophylactic antibiotic The Lord healed her little body and she never ended up needing the expected surgical correction. Yay!
In this same year she was diagnosed w/ a benign heart murmur, an ASD that was expected to close. It was at a sick child visit, nearly a year after the diagnosis, that a doctor recommended we revisit the cardiologist. At this point her ASD was reported to be too large to be patched via the Cath. Lab. and she would need open heart surgery soon as her heart was dilated. She was put on Digoxin while we nailed down the details for surgery.
We were scared and didn’t even know what kind of questions to ask to better prepare ourselves for what was about to happen. Both my husband I and felt like we were responsible to make an educated decision with the doctors help, but found ourselves wondering where to even start. I figured meeting with the surgeon would be a good place to start.
In our meeting w/ the surgeon he did a good job of explaining how he would construct the missing septum using her pericardium tissue and assured us that he was the man for the job. When I asked him if we had any other options or places to go to get a second opinion, his response was something of the sort; She will be just fine right here. This type of surgery is like the appetizer before the main course. This was a very simple surgery for him to do and it will be one of several for the day.
His response bothered me. I wanted to hear statistics, some kind of hard facts as why I could trust this man w my daughter. For pete’s sake he was talking to a Math major and Air Traffic Controller. It never sat right w me that he never directly answered my question about a second opinion, but I attibuted a lot of those unsettled feelings to just being afraid of my daughter having to undergo open heart surgery.
Norah had OHS Jan. 2012 at age 2.5. We thank The Lord that we are one of those families that have a happy ending to the story. Norah’s surgery was a success and is considered cured. Indeed the surgeon was skilled at doing this repair and we felt blessed. But, I have to be honest. When I found out that there was another facility right here in our state that had a children’s hospital and pediatric thoracic surgeon. I felt deceived and that I was forced into making an ignorant decision on purpose. I don’t want to sound ungrateful for what our surgeon did for Norah. We are forever grateful to that man. I just wish we were given more information prior and allowed to make a more educated decision for Norah. If this story had not had such a “happy ending” I can’t imagine the pain, anger, and guilt I would potentially carry.