Heart Month with Finn

In recognition of American Heart Month, members from the Speak Now for Kids community will share their personal experience of raising a child with a congenital heart defect (CHD). Today, we will hear from Finn’s mom, Kelly, on how she’s currently raising awareness for Finn and kids like him.

When I was pregnant with Finn, my doctors believed that he would not make it to his birth. Instead of having four different heart chambers, my ultrasound showed that Finn didn’t have clear separations inside his heart.

My son was born with four congenital heart defects and endured more than 14 surgeries — two of them open heart surgery — during his first year of life. My husband and I spent most of our time learning about this condition and searching for the best care. We researched the top cardiac hospitals in the entire country! It didn’t matter to us if we had to travel across state line — we would do it for our child. The Children’s Hospital of Philadelphia (CHOP) willingly took his case and we were blown away by their care in so many ways. Not only did CHOP check the box for Finn’s cardiac care, but they were able to provide the best care for other anatomical issues. We were very impressed by their ability to work together as a united team and put our child first. They have empathy, kindness and truly treat Finn like their own child.

A few months after Finn’s second birthday, he had his second open heart surgery. We experienced a true miracle due to prayer and the technology advances at CHOP. Finn’s heart surgery was completed in 37 minutes and he was home after spending just one week in the hospital!

Most of our care is in Virginia and we have received a lot of financial support from Medicaid. Without Medicaid, Finn would not survive! One of the heart medicines he takes is over $6,000 every 10 days! There is no way that we could afford that, and I’m sure that price is not realistic for most families. Unfortunately, when we travel to Philadelphia, we have to rely on our main private insurance, which doesn’t cover everything that Finn needs. But luckily, we only need to be in Philadelphia for a couple of surgeries and some follow-up appointments. Otherwise, Medicaid helps us cover the costs of his care in Virginia.

Most people don’t know how common CHD is. One in 100 kids are born with special hearts like Finn’s every year, hearts that do not work exactly right. To live, they need special tests, medicines and big operations. It is very important to me to advocate for pediatric heart disease because awareness leads to research funding to help kids like Finn.

Finn still has a long way to go to catch up on milestones. But, Finn’s little heart is doing the best it has ever done! Finn, now 4, has the energy to eat more, move more, dace more and even get into more trouble. He enjoys playing, learning and being out and about with this new-found energy. We are beyond grateful to each and every person who has played a role in his journey— we look forward to what the future holds!

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