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Mother-daughter bond made unbreakable by heart condition

By The Health News Team | March 12, 2024
Two hands forming a heart shape

It began the moment her first daughter was born. From that moment on, Laura Delgado knew her life’s purpose was to love and protect her three daughters.

From babies, to toddlers, to teenagers and young adults, the sisters have always been the light of their mom’s life. The four women are incredibly close — a bond made unbreakable through the many trials and tribulations related to several members of their family living with a rare genetic heart condition: Carney complex.

Carney complex is a rare hereditary disorder associated with connective tissue tumors called myxomas. There can be other symptoms, but heart tumors are the most common.

Carney complex across multiple generations

Laura remembers her first experience with the disorder as a child. She and her sister were in the backyard when her sister suddenly passed out and was rushed to the hospital. There, doctors found a tumor and performed open-heart surgery to remove it.

Testing was recommended for the entire family; Laura’s grandma, mom, sister, three daughters, and nephew all had Carney complex. It wasn’t until years later that Laura experienced her own signs of the disorder.

While pregnant and living overseas, Laura’s blood pressure spiked dangerously high. Doctors determined she had Cushing syndrome, which is often associated with Carney complex. Her daughter was born prematurely at just 24 weeks.

Years went by, and Laura had two more daughters. In 2020, Laura was found to have four tumors in her heart and had open-heart surgery to remove then.

Over time, the tumors grew back, and Laura was scheduled for a second surgery in 2023. This time, she knew what to expect. Everything was set, but the events of one normal morning at home changed everything.

Overcoming Carney complex together

“’Mom, Alexis can’t get out of bed! She can’t move her body!’” Laura says her older daughter frantically announced about her sister Alexis.

“I looked at Alexis’s face and I knew she was having a stroke,” Laura says. “I called 911 and asked the ambulance to bring us to the closest hospital with a stroke center. That was Sharp Chula Vista Medical Center.”

At the hospital, doctors had to navigate a tricky set of circumstances. At only 19 and with no history of smoking or drug use, there was no obvious reason for the stroke Alexis was having.

“Without knowing what caused the stroke, they said it’s likely she’ll have another,” Laura remembers. “I asked them to check her heart. Then they found it; the tumor was hidden in her heart.”

Just a few days from her own open-heart surgery, her daughter Alexis was now scheduled to have the same surgery — on the same day.

“I met Dr. Alexandra Kharazi, my daughter’s cardiothoracic surgeon,” Laura says. “Dr. Kharazi is amazing. There was a lot of risk involved in my daughter’s surgery, but Dr. Kharazi made us feel confident she could navigate it successfully. You meet her and you’re immediately impressed and calmed.”

“A successful heart operation hinges on what I call ‘a sequence of events,’” says Dr. Kharazi. “You can think of this as a specific set of steps in chronological order necessary to achieve a desired outcome. This includes not only the operative steps, but also the post-operative care period, when family and friends often support their loved ones.”

What made Alexis's situation unique, Dr. Kharazi says, was that Laura would have the same operation on the same day as Alexis, and their operations would start at the exact same time. This meant Alexis wouldn't have the person closest to her — her mother — there when she came out of the operating room.

“As a mother to a 4-year-old girl, I understood the trust it must have taken in me and my team to guide Alexis through her sequence while Laura was recovering,” Dr. Kharazi says.

Unable to be by her daughter’s side in the morning, Laura spent the night before both of their surgeries by her bed in the ICU. “I was so scared to wake up from my surgery,” Laura tearfully remembers. “‘What if I wake up and she’s gone?’ I thought.”

Soon after Laura’s surgery was finished, Alexis’s father called with the news: “’Alexis is good,’” Laura says he told her. “’She’s good, she’s good — the surgery went well!’”

Combined strength gets them through

Alexis remained at Sharp Chula Vista for two weeks while she recovered. She began physical therapy and regained her ability to speak. Her face has healed from the stroke and she’s slowly returning to her studies at UCSD to become a doctor.

Her proud mom credits her daughter’s inner strength for her miraculous recovery. “Alexis is one of the strongest people I know,” Laura says. “But as mom, my babies come first.

Laura shares that she had to push aside everything that was going on with her own health. She admits there were — and still are — days she goes into the bathroom to cry. “I was told Alexis might not survive the stroke and surgery, but I couldn’t tell her that,” she says.

After all her family has been through — for generations — Laura wants others to understand that Carney complex is usually discovered too late. If you have a family history of a heart condition, she strongly advises you to talk with your doctor.

“As patients, we must ask questions,” Laura says. “We’re in our bodies and we know if something doesn’t seem right.”

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