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Luci’s Mom Shares

It can be tough raising a Marfan child. I struggle with two voices: The one that wants to keep my child safe and the one I call my “You go, girl!” voice that wants her to define her own limits through experience.

In 1997 as a junior attending the University of Georgia, I experienced a sudden tear in my aorta while running to catch a bus. That frightening experience was my introduction to Marfan Syndrome. Eight years later, my husband, Daniel, and I were ready to start a family. This was not an easy decision. The chance of our child having Marfan Syndrome was 50/50, but we knew that being diagnosed at birth was an immense advantage our child would have in living live a long, healthy life.

However, health wasn’t my only concern. I endured a lot of teasing growing up for my exceedingly tall and thin frame. I worried about the social acceptance of a child with Marfan Syndrome, particularly if that child was a girl. I finally solved my dilemma when I asked myself whether—as a woman living with Marfan— Would I give my life back if I had the opportunity. Resoundingly the answer was no.

Two years after we were married, Daniel and I had our first daughter, Emma Grace. Three years after Emma Grace, our family was made complete when little sister Luci was born. Today, we are parents to two amazing girls: Emma Grace, who does not have Marfan Syndrome and Luci, who does.

We had done months of research about pregnancy with Marfan Syndrome, as well as the prospects and pitfalls for a child born in today’s world with the condition. We had met with cardiologists, geneticists, neonatologists, and perinatologists in three states. Still, when I was told by Northside’s neonatologist of Luci’s conclusive diagnosis, I was crushed. Despite being as prepared as a parent can be, immediate fear overcame me. Luci’s first cardiology appointment was with Dr. Heather Phelps at our local Sibley outpatient clinic. Dr. Phelps was immensely helpful in monitoring Luci’s heart measurements and explaining the complicated numbers we needed to track in order to assess Luci’s risk.
While we owe so much to Dr. Phelps for guiding us through those first months of wading through Luci’s shifting prognoses, we are most indebted to her for referring us to Sibley’s aortopathy program. After Luci’s acceptance into this program for children with aortic abnormalities, Dr. Denver Sallee, Director of the Aortic and Vascular program, became her cardiologist. Dr. Sallee and Nurse Practitioner Leslie Bishop have been an unconditional blessing to our family. With a calm demeanor and an astounding mental catalog of relevant research and studies, Dr. Sallee is able to offer ever-evolving, tailored assessments of Luci’s cardiovascular health. Nurse Bishop is a dedicated advocate for education surrounding the lifestyle implications and medical challenges of Marfan. She has been paramount in helping us amass a hearty support network.

The best compliment I can pay Sibley is to state emphatically that our anxieties and stress about our child’s future all but disappeared as our relationship with the organization grew. No one wants to have a child with any health concerns, but Sibley’s network of professionals has made it manageable. Marfan Syndrome affects so many systems throughout the body that Luci is limited in the activities she can pursue. She attends her big sister’s basketball, soccer, and track meets, and the athlete in her longs to be out there doing those same sports. Not much can be done to mitigate her restrictions, but we never want her to feel less than other kids. When she was old enough to notice her differences, we would discuss her “soft heart.” We needed a gentle way to explain the need for her to rest when necessary without any associated stigma. “You have a special heart, like Mama,” I would tell her. “It’s softer than other people’s hearts, so it can get hurt more easily. You need to always listen to your body and be protective of your heart because you’re going to need it for a long time.”

It can be tough raising a Marfan child. I struggle with two voices: The one that wants to keep my child safe and the one I call my “You go, girl!” voice that wants her to define her own limits through experience. When Luci was 5, she participated in a horseback riding camp. It was love at first neigh. Although there are risks with horseback riding, primarily due to the falls that are part of the sport, for now we’re encouraging Luci to let loose her inner cowgirl. This spring she’ll start Western style lessons. As her skills and confidence grow, so will her understanding of what living with Marfan means. Although it may not be every parent’s choice, we’re inclined to give her a strong voice in deciding how far to take her passion for horses. For now, her dreams are to be a star barrel racer and a large animal vet. She may have a soft heart, but our Luci has a strong spirit. As her parents, Daniel and I feel it’s our duty to protect both.

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