Jul 3, 2019, 11:14:51 AM CDT Jul 3, 2019, 12:09:26 PM CDT

Amber finds care for congenital heart disease as an adult

Growing up with a congenital heart defect made Amber stronger. Now, as an adult, she finds continuing support at Children's Health.

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Amber Amber

Growing up, Amber knew she was different than other kids. When they would run and play, she would get tired and had a hard time keeping up.

"Even though I wanted to, I couldn't always do what the other kids were doing," says Amber. "But I had to push through it to be as tough as I am today."

Two weeks after Amber was born, doctors diagnosed her with Tetralogy of Fallot, a condition that involves four congenital heart defects. As a baby, she began turning blue as her heart struggled to pump blood throughout her body. Doctors told her mother, Dealdra, that Amber would need surgery or she wouldn't survive.

Amber had her first heart surgery in 1994 at 10 months old. Throughout her childhood, she had to take daily medications and frequent trips to see her physicians. Then, a decision to attend a summer camp changed her outlook – and introduced her to a team who would continue to care for her into adulthood.

A new home and new hope

When Amber was 6 years old, she and her mother moved to Denton, Texas to be closer to family. When she was 8, Amber had another heart procedure, and when summer came, her doctor suggested Amber do something she'd never done before – go to summer camp. The experience was life-changing.

Amber at camp"It was different," says Amber. "It was scary, but it was a lot of fun. I got to do things like rock climbing, archery and kayaking. I got to do things that I never thought I would get to do as a young girl."

That camp was Camp Moss, a one-week camp specifically designed for children with congenital heart defects. It gives kids who have faced surgeries, scars and challenges the opportunity to just be kids in a safe and supportive environment.

In addition to offering activities, the camp is fully outfitted and staffed by Children's Health℠ team members, who provide critical care to any child who needs it while at camp. Amber was one of the healthier campers. Other campers were on oxygen or had recently undergone a heart transplant. The camp has all the capabilities to care for children with heart conditions, allowing them to make lifelong connections.

"I met a lot of great people that I still keep in touch with today," says Amber. "I went back as a junior counselor at 17 because I wanted to give other kids the experience that everybody gave me. As a counselor, you have a different perspective. You see the tremendous amount of work that goes into putting the camp together, keeping it running and how the counselors love to sacrifice their time for others. It is the best place."

Receiving adult care at Children's Health

Amber is now 25 and facing a new and exciting challenge – being a mother. Her daughter, Ava Rose, was born in August 2018. While she was pregnant, Amber visited Children's Health for a fetal echocardiography to ensure her baby had a healthy heart.

"The doctors were very thorough in trying to make sure the baby's heart had developed fully," says Amber. "They were not only thorough, the doctors, nurses and staff were also so kind, and clearly explained everything."

Fortunately, Ava's heart was perfectly healthy – but Amber's heart needed more support. After giving birth to her daughter, her blood pressure remained high. By January, when her daughter was just 5 months old, Amber knew she would need another open-heart surgery. Her surgery would be performed at Children's Health by Camille Hancock Friesen, M.D., Surgical Director of the Adult Congenital Heart Disease program at Children's Health and Professor of Cardiovascular and Thoracic Surgery at UT Southwestern.

"I was happy to have my surgery at Children's Health. I love it here," says Amber. "They do all the little things you don't even think about."

Amber and her mother say the care at Children's Health goes beyond what a patient would ever expect. They work to keep patients comfortable and safe. From numbing the arm with a spray before placing an IV, to the cheerful, colorful waiting rooms, Children's Health is designed to put patients at ease, no matter their age.

Amber, her mother and care teamAmber saw many familiar faces while she was back at Children's Health, including Mellissa Myers, the nurse practitioner who has served as Co-Director of Camp Moss for 23 years.

"It's a blessing and an honor to care for these kids," says Mellissa. "My joy is to see them as young adults, in the next phase of their lives."

On March 11, Amber underwent another successful heart surgery. Her family, including aunts, uncles and cousins, all stepped in to help care for her daughter as she recovered.

Inspired by her own experiences as a child, Amber has made caring for other children her career, working at various summer camps and daycares. She is also working towards a bachelor's degree in early childhood education.

Amber credits growing up with multiple heart defects for making her as tough as she is – tough enough to handle multiple heart surgeries, recoveries, being a new mom and pursuing her degree.

"It wasn't always easy," says Amber, "but I'm happy I went through what I did. It taught me resilience and how to keep pushing and keep going, without giving up."

Learn more

As one of only a few nationally accredited medical programs for adult congenital heart disease, the experts at Children's Health offer a full spectrum of care for patients of every age. Learn more about our adult congenital heart disease program and services.

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cardiology, heart, patient story, surgery

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