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).
Thanks to an alert nurse who noticed her heart murmur while giving her a bath, Megan was diagnosed just hours after she was born.
Today, Megan’s mom, Beth, will share her story.
“We think there is something wrong with your baby’s heart.”
Those are words that we will never forget.
Ten words — it only took ten words to change the excitement we had just been sharing with our families over the birth of our first child.
Ten words to put the worst kind of fear in us that a parent will ever face.
Ten words to alter the rest of our daughter’s life.
Ten words to start us on a journey identical to a roller coaster, filled with ups and downs.
Those ten words would enter us into the world of CHDs.
Our daughter, Megan, was born 12 years ago. I had a normal pregnancy, followed all of the rules, read all of the books, and couldn’t wait to meet our first child. Delivery went smoothly, and we celebrated with our families over the addition of their first grandchild. After our families left, the nurses took Megan to warm her and give her a bath. That was the last time we would feel the joy of having our sweet baby without knowing the fears that we would soon face.
After a nurse noticed that Megan had a heart murmur, she alerted a doctor who found that Megan’s oxygen level in her blood was low. He came into my room, without Megan, and told us that they just wanted to run a few tests to determine what might be going on. We gave permission and called our families.
An hour later, we heard those ten words, “We think there is something wrong with your baby’s heart.” Followed by, “We’ve contacted Children’s Hospital in Pittsburgh and Megan will be flown there by medical helicopter.” We were in complete shock.
At 12 hours old, Megan underwent a cardiac catheterization that showed she had a CHD called Pulmonary Atresia. At three days old, she had the open-heart surgery that saved her life. There are no words to describe what it is like handing your child over to a surgeon that you know has to temporarily stop your child’s heart to operate on it.
That same baby that we were just taking pictures, we hadn’t held in days and they were taking her into the operating room. The next few hours were the longest of my life.
Megan was in the hospital for nearly her entire first month of life. We had challenges with feeding and weight gain, on top of her heart condition. Megan left the hospital on many medications and she had a feeding tube for a few weeks.
That was when a new set of fears came in — will our insurance cover all of this, and what will we do if it doesn’t? Fortunately, Megan was able to get secondary insurance through the state, Medicaid, which covered anything that our primary insurance did not.
Becoming a heart mom wasn’t something that I asked for, but because of it I have met the bravest and strongest children. I’ve celebrated with other parents when surgeries went well, and cried with parents that lost their children. Awareness for CHDs is so important because it’s the most common birth defect in the United States, yet most people don’t even know that children can have something wrong with their hearts. I know we didn’t……
Looking for more resources for parents of children with CHD? Click here to learn more about Mended Little Hearts.