A portrait of my daughter every day in 2014

Today marks the start of Congenital Heart Defect awareness week. It’s a very real part of this girls life, a part that is easy to forget about, since she seems so healthy.

Heart defects are the number one birth defect. Nearly 1 in 100 babies are born with a heart defect. Most have no known cause. Her defect, Ebsteins anomaly, has only one known cause, maternal use of lithium, which I’ve never never taken. Somewhere in those first few weeks, where cells were dividing, and her heart was forming, something went wrong. The leaflets that make up the tricuspid valve formed incorrectly. Many people with Ebsteins also have an Atrial Septal Defect(ASD), or a hole, and Wolff Parkinsons White(WPW), an irregular rhythm. She has both. Ebsteins occurs in approximately 1 of 200,000 live births. She’s a rare breed, this girl of mine. A little red head with a special heart. I lovingly refer to her as my little mutant(an X-Men reference).

This is what our mornings look like. She gets breakfast and then meds. We’ve been able to wean her off of all meds except for Enalapril, which she will be on long term. Many people with high blood pressure are given this drug, although that’s not the reason she is on it. It works by relaxing blood vessels, which allows more blood and oxygen to get to the heart. This helps make her hearts job easier.

Last year at this time her morning med routine was quite different. There were five syringes each morning, and meds three times a day. I’m grateful we’re down to one med twice a day. She’s so good at taking them, I say “time for baby meds” and she opens her little mouth, swallows and says “mmmmm”. It’s not even flavored. She hates that flavored crap. Getting Tylenol or Motrin in her is a whole different story.

Some day she will have heart surgery. She may have a heart catheterization, open heart surgery or both. Had she needed surgery at birth she would have already had 2-3 surgeries by now. Many kids with Ebsteins do, especially those with a defect as severe as hers. Somehow her little heart and body figured out a way to function normally, despite her defect.

What can you do?

Donate. Her hospital is constantly expanding, having just built a new radiology suite, and currently working on a surgical NICU. The better is gets the better caliber of doctors, surgeons and nurses it will attract. All bonus factors for the time when surgery comes. I would rather not have to travel to Mayo or Boston when that time comes so the more improvements out hospital gets, the better for us.

If you’re local, contact your Senators. This story has been running for months now. Our state needs to make this $4 test mandatory to help babies who don’t present as obviously as our girl did.

Donate here. Research in this field is so limited. Funding is needed to help doctors figure out more about kids like mine and how to help them.