Even before her birth, Emmett Hightshoe had a team of cardiologists and surgeons ready to care for her.
At her mother’s 20-week prenatal scan, Emmett was diagnosed with hypoplastic left heart syndrome (HLHS), which causes the left half of the heart to remain underdeveloped.
At four months old, Emmett was diagnosed with Kabuki syndrome, a rare genetic disorder, as well.
When a child comes to Atrium Health Levine Children’s with a rare disease, it can take a big team to help.
Emmett and her parents soon had the support of 13 specialists at Levine Children’s, including endocrinologists, immunologists, social workers and palliative care doctors.
“Emmett has a small army at her beck and call,” says Gonzalo Wallis, MD, vice-chair of pediatric cardiology and Emmett’s cardiologist. “This is what differentiates caring for a child from just taking care of a child: Caring for a child means getting them everything that they need in one place without having to go to three different appointments in three different places.”
Kabuki syndrome is named for facial features that resemble the make-up used in traditional Japanese Kabuki theater: long eyelashes, arched eyebrows, long eyelid openings.
Kabuki syndrome is a very rare condition and affects each child differently. It can compromise multiple organ systems, creating the need for a multidisciplinary team with a comprehensive plan. The disease has a high correlation with HLHS, as well as developmental delays and a compromised immune system.
The diagnosis came from a pediatric geneticist at Levine Children’s, Laurie Demmer, MD.
As a little girl faces a rare disease, a big team of specialists at Levine Children’s supports her and her parents.
Because Emmett’s parents, Maleigh and John, had the HLHS diagnosis before her birth, they had several months to find the best hospital for Emmett’s care.
They live in Charlotte, but they visited hospitals around the country to interview doctors and seek the best statistics — but their search revealed another crucial factor.
“Hospitals in other cities had great facilities, but they felt pretty business-like. Then when we got to Levine Children’s, we first met with a surgeon who greeted us with, ‘Oh, we hug here!’” Maleigh laughs at the memory from three years ago. “We walked through the unit and saw the nurses huddled with families, and we just knew that the community there was all in for the kids. It really hit home. We realized that this decision couldn’t just be about statistics and numbers. It was about relationships, too.”
Emmett had her first heart surgery while she was just a newborn, a surgery that kept her in the hospital for three months. She returned for a second surgery several months later.
Levine Children’s didn’t just provide care for Emmett in the hospital, the doctors and nurses equipped John and Maleigh to care for her at home, too.
Emmett is now four years old, and she’s spent nearly 20% of her life in the hospital.
With Kabuki syndrome and HLHS, Emmett faces a challenging road.
Maleigh and John have done extensive research on the condition, and they’re dedicated to giving Emmett the highest quality of life. They’ve become close partners with the doctors in determining Emmett’s care plan.
“Maleigh and John are going through a lot, and the last thing they need is to experience difficulties dealing with the healthcare system,” Dr. Demmer says. “So, we help them navigate the system and use all resources available to us — social workers, child life, everyone we can — to make their lives a little bit easier.”
The close relationships between the doctors, nurses and parents have helped Maleigh and John spend more time being simply Mom and Dad.
You can help children and families like Emmett by supporting the Hopebuilders 5K.
The Hopebuilders 5K was founded 26 years ago by two local families whose children — both battling cancer — had to seek medical care outside of Charlotte.
Sadly, those children lost their fight against the terrible disease, but their families joined forces to help others facing similar challenges.
Since that time, the Hopebuilders 5K has become the flagship community fundraising event for Levine Children’s Hospital, bringing together more than 1,000 runners, donors, sponsors and advocates annually to support pediatric patient initiatives.
The Hopebuilders 5K exclusively benefits the areas of greatest need at Atrium Health Levine Children’s, allowing children and families to receive the best care where they need it most: close to home.
Since its establishment, the Hopebuilders 5K has raised nearly $3 million for patient programs at Levine Children’s Hospital.
To ensure the safety of patients, teammates and the greater Charlotte community, Atrium Health Foundation will transition this year’s Hopebuilders 5K to a fully virtual race and celebration.
From Sunday, Oct. 24 to Saturday, Oct. 30, Atrium Health Foundation invites supporters to set the pace and choose the place to help provide hope for patients of Levine Children’s Hospital.
Simply register for the Hopebuilders 5K and complete your own personal 5K or another activity of your choice during the weeklong event.
CLICK HERE FOR MORE INFORMATION OR TO REGISTER FOR THE HOPEBUILDERS 5K.
If you have an inspiring story, please contact Kevin Campbell, WSOC-TV/WAXN-TV/Telemundo Charlotte Public Affairs Manager, at Kevin.Campbell@wsoctv.com.
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