In honor of National Heart Month this February, Alex Smith Ritenbaugh has agreed to share about her son Logan’s very special heart. Every 1 in 110 babies born will have a Congenital Heart Defect (CHD), making it the most common birth defect in the world.
Untethered. That was the best – only? – way Alex could describe how she felt as she cried into her plate of Mexican food. At just over 20 weeks pregnant, she was driving home from the University of Alabama Birmingham Hospital (UAB) with her husband, Clay. They had visited with a specialist after a routine anatomy scan tendered results that were…complicated.
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Alex and I met in daycare and have been friends since we were 5. The years in between have given us a front row seat to questionable hair and wardrobe decisions, lots of tears, laughs, and laughter through tears. Being in someone’s life this long means that we can see things in the other person that they often can’t see in themselves. She is strong and brave and I’m so proud of her.
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In the coming weeks and months, Alex and Clay would learn more about their son’s unique anatomy and one of a kind heart. A heart so rare and special that their incredible pediatric cardiologist would have to go off-book and draw his own diagram of how Logan’s heart worked. The pregnancy progressed pretty normally, other than monthly appointments in Birmingham and the fact that Alex is pretty sure she cried a lifetime’s allotment of tears in 2017. After giving birth in a crowded room of specialists, followed by a long 7-week stay in the NICU at Children’s Hospital (connected to UAB by a covered walkway) – Alex and Clay got to bring Logan home.
For Alex and Clay, the unexpected is the new normal. Navigating the insurance and healthcare systems and bearing witness to the harsh reality of inequalities in both, signing your name on a consent form that allows for surgeries, handing over your child to the unknown and watching as he is wheeled away – all as first time parents. But there have also been many unexpected graces: medical professionals who were uncommonly patient and kind, prayers from all over the world and witnessing tangible miracles, authentically living in the moment. During each step, they were surrounded on all sides with support from their community. An aunt who prayed every day that Logan would have a spleen – and he does. The doctor who spent all day with critical patients and stayed extra time just for a social call. The NICU chaplain who offered words of comfort, peace, and truth — words they needed and still revisit. The family and friends who never gave up.
And it’s not over. Logan will have another heart surgery sometime in the future. And the community that held them in those early days will surely meet them again.
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So what does this heart warrior mama want you to know?
-To the expectant mom: Educate yourself on questions to ask during your 20 week anatomy scan. As exciting as it can be to find out the gender of your growing babe, the technicians are looking for lots of important markers. Many CHD won’t have an in-utero diagnosis; In Logan’s case this would have created a critical situation that would have had life-long implications. (Not sure what to ask, start here)
-To the mom facing a diagnosis and/or a complex future: Even when it feels like the world is ending and you think it’s not going to be ok, you are going to make it. A big part of this journey is opening yourself up to others. You are going to need people to come around you, to love you through it. Also know that the internet is a double edged sword – ‘Googling’ will do more harm than good, but getting plugged in to online support groups and resources is something Alex wishes she had done sooner.
-To the mom with curious kids: Encourage your child to ask questions instead of ignoring or shushing. Some of Alex’s best conversations have been explaining to other kids about Logan’s feeding tube in public or why he wore a helmet. Normalize different; This change starts with us, parents!
And when it’s not you, make sure you’re reaching out to the mom whose kids are a little (or a lot!) different, they may or may not be in a place where they can reach out to you. Include them, encourage them, and let them know you’re thinking about them and standing with them in spirit and prayer.
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“There are more adults living with CHD than there are children – which is an amazing thing. But for funding and research to continue, people have to know about it. That’s what CHD Week let’s us do.” Join us in celebrating National CHD Week February 7th-14th.
Additional resources:
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