What do families do when their baby has cardiac abnormalities?
They take things one day at a time. They pray a lot. They find support.
February, more commonly known for romantic gestures and heart-shaped chocolates also celebrates miracle babies born with Congenital Heart Disease (CHD). So I would like to share one family’s story to illustrate why CHD gets a special month to spread awareness. This sweet family just celebrated their heart warrior’s 7th birthday!
“Your baby has a congenital heart defect that we need to identify.” These are the words you can’t prepare yourself for when you’re excitedly expecting your first child. But they’re the words Mark and Natalie Kirkley heard in 2011 after being married for just a few short months. Upon further specialist appointments, tests and ultrasounds they discovered more medically complex information-- their baby’s specific diagnosis was Heterotaxy. It’s a condition that involves more organs than just the heart. “Hetero-,” meaning different, and “-taxy,” meaning arrangement, describes how the heart and other organs within the chest and abdominal cavities are rearranged atypically. Once the surgeon was able to examine her unique physiology he explained more specifically how her heart, stomach and intestines were situated out of the usual places, and he said it was all connected in a way he had never seen before.
Natalie and Mark prepared for the suggested medical course to have Abby taken via medical transport to Children’s Healthcare of Atlanta immediately after she was born for heart surgery. She was stable upon entering the world, but she needed medical attention from her first breath, unable to go home for the first 2 ½ months of her life.
Since that wonderful day in 2012 these loving parents have relied on their faith, family and friends for the strength it took to endure all the challenges they faced. All in all Abby has had 2 PICC lines, 4 heart lines, more than 10 PIV’s, and 6 surgeries-- 4 on her heart, and 2 for placing and then removing a feeding tube into her stomach. She’s also had additional hospital stays since then, including one for 3 weeks in Boston where she was treated by Heterotaxy specialists who inserted a pacemaker for her heart. When she was ready to go home for the first time she needed oxygen, several medications and a G-Tube for her nutrition (rather than eating everything by mouth). She could not go to a regular childcare.
Luckily her parents were able to adjust their full-time work schedules and their family members’ availability so that Abby could be loved and cared for by either her parents or grandparents all the time. “I wish we could have had Harmony Children’s Village for our Abby-doll when she was a baby! It would have been so much better for our family,” says Mark. “Abby would have loved to have had friends to play with,” notes Natalie, adding that, “she was not delayed cognitively, in fact she was advanced verbally so she would have really benefited from speaking and socializing with others too.”
Despite how hard it was, this family was very lucky. Many parents who have similar situations cannot avoid sacrificing one of the parent’s careers in order to care for their child with medical needs. Natalie and Mark are part of the village because they believe in our mission to support families like theirs to have better balance in their lives.
So this February, and annually, we celebrate heart warriors like Abby! She continues to be a smart, sweet girl and we are proud of how bravely she faces her lifelong journey with CHD and Heterotaxy! Valentine’s Day gives us an opportunity to remember all heart warriors and their families who do so much to keep them safe and healthy.
At Harmony Children’s Village we can’t wait to be a source of support and love for other heart warrior families!
What miracle babies inspire you? Please comment here or email me at firstname.lastname@example.org with stories you want to share!
Thanks for being part of the village!
To my friends, Mark and Natalie— I appreciate the opportunity to share your beautiful story and precious photos! Thank you for being one of my inspirations, and for your whole-hearted support of Harmony!