Keegan's Story

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, Keegan’s mom, Andrea, will share his story.

On December 31, 2012, my husband and I visited the Children’s Heart Center at Strong in Rochester, NY, for a fetal echocardiogram. The ultrasound technician in our obstetrician’s office had been unable to get an acceptable view of our twins’ hearts in-utero. It was that day that our world was completely changed — we learned one of our twins would be born with transposition of the great arteries. From that point on, I would be followed by a specialty, high risk team of obstetricians. We were fortunate enough, the boys and I, to make it to 39 weeks at delivery. Both babies were immediately whisked away to be checked over and to receive echocardiograms to ensure that they received the best care. Our baby “A,” Keegan, would require life-saving heart surgery as soon as possible. 

Keegan.jpgAs the days progressed, it was clear to us that Keegan’s condition was worse than expected. On his 4th day of life, Keegan was placed on ECMO, a heart/lung bypass machine, to allow his lungs to heal and become more stable prior to the planned arterial switch surgery. Fast forward seven very long days, and he was able to be taken off ECMO and prepared for his open-heart surgery. Dr. George Alfieris and his team at Golisano Children’s Hospital saved Keegan's life on April 15, 2013.

Keegan was released from the hospital at 36 days old. He was on medical food due to developing a condition that prohibited the proper digestion of fats. He was on a medication to help stabize the rhythm of his heart beat. But, at that point, all we as parents could focus on was that our baby was home and reunited with his twin.

We were very fortunate to have a comprehensive insurance plan to cover the cost of Keegan's care which reached over $900,000. While everything was happening so fast, there was a small piece of comfort for my husband and me in knowing our baby boy was covered. When all you are focusing on is your hopes and prayers that your child lives, medical bills should not be weighing on your mind.

Keegan now sees his cardiologist annually for check-ups at that same office where he was diagnosed with his heart defect. We sought the assistance of early intervention for physical therapy, occupational therapy, speech and special education as Keegan continues to work so hard to catch up to where other children his age are developmentally. Many of the children born with heart defects have developmental delays. However, we see a happy, healthy toddler that keeps up with his twin brother.

I believe that everyone should be aware of CHDs as they are the number one birth defect. Chances are that you know someone affected by CHD. These babies and children deserve everything we can give them to help them have a fighting chance for survival.

Looking for more resources for parents of children with CHD? Click here to learn more about the Pediatric Congenital Heart Association.

Don’t forget to check out other first-person accounts about kids with CHD on our blog page

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