In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).
Today, Alexander’s mom, Kelly, will share his story.
Alexander is a four-year-old, amazing little boy who has tetralogy of fallot, pulmonary of atresia, cleft tricuspid valve, major aortopulmonary collateral arteries (MAPCAS), a restrictive ventricular septal defect (VSD) and an arched aorta.
When he was two and a half months old, Alexander got a fever and we took him to the emergency room; a murmur was heard during his physical and we were sent to cardiology. A week later he was diagnosed. It was then that we found out he was born with congenital heart defects and would require surgery.
We cried when we found out, and then telling our family was the hardest thing ever. When he went for his first chest catheter we were surrounded by our family. At the time, we thought handing him over for the first time was the scariest moment of our lives. When Dr. Leonard came out after the cath and confirmed our fear, we cried some more and told him we hoped he was wrong — he agreed.
It's the toughest job I've ever had, but it's one I wouldn't change for anything. I've learned so much since becoming Alexander’s mom. It's a lot of phone calls, doctor visits, medicines, surgeries and worrying, but it's worth it.
He sees about 10 specialists; most of them are at Strong Memorial Hospital which is about an hour and a half away from home. We usually see doctors about once a month. This month it's a little more because he's having some testing and surgery. We also see cardiology once every 3-6 months. We have Medicaid — without it we would have no health insurance. I’m a stay at home mom and we couldn't afford to pay the premiums through my husband’s work.
I believe other people should care about CHD because it can happen to anyone and without proper funding and research there can't be proper treatment for these children. Alexander can't do the same things other kids his age can without help, but we still want people to interact with him like they would anyone else (except if you are sick stay away!)
Looking for more resources for parents of children with CHD? Click here to learn more about Mended Little Hearts
Don’t forget to check out other first-person accounts about kids with CHD on our blog page