Mom waiting for heart transplant shares her story

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After the birth of her second child, Zuleyma Santos was diagnosed with a rare form of heart failure and placed on the heart transplant waiting list. Photography courtesy of Padilla Co

Mom-of-two Zuleyma Santos is working with the American Heart Association to raise awareness of the dangers of heart disease in younger adults.

On paper, one would think Zuleyma SantosThe 37-year-old had it all.

Two new children born in as many years. A career in retail that she loved. A dedicated and loving husband who was always there for her despite his cancer and a large, close and supportive family.

It should have been the time of her life.

But within those events came a blockbuster: Santos developed a rare and often fatal heart disease brought on by pregnancy.

That’s why today she’s smiling as she adjusts the ever-present backpack on her shoulder, which holds 10 pounds of batteries, constantly on duty to keep the machine pumping her heart going while she awaits a heart transplant.

While there were signs – and a diagnosis – after the birth of their second child in 2019, no one realized the seriousness of the situation and Santos, who has been busy starting her life as a parent and focusing on her husband’s cancer treatments, didn’t push.

“I feel like there were symptoms that went unanswered,” she told Healthline. “I’ve always been a strong person. You’ll never hear me say, “Oh, I hurt.” That’s just not me.

This “hands on” attitude could have proved fatal when their second child was born.

But it also put her in a space she never thought she would be in — spokeswoman for the American Heart Association.

“I felt like I needed a way to reach people. To help them speak for themselves.”

“I never thought I would have heart failure or my partner would have cancer, at least not when our children are babies in dirty diapers walking between my hospital bed. But here I am. And if I can be the voice they hear — to know there are resources out there — then so be it.”

Santos was holding her then two-day-old baby in the hospital when she suddenly could hardly breathe.

“I called the nurse and said, ‘Hold the baby, there’s something wrong with me!'” she recalled. “I couldn’t breathe and I thought I was going to lose my life.”

She was examined, tested and then diagnosed. It was peripartum cardiomyopathy, they told her, a form of heart failure that occurs in the last month of pregnancy or in the first few months after birth.

The baby went home, but Santos stayed in the hospital for four more days. She was stabilized and told to rest and see a cardiologist at home for follow-up.

She did, but since she was told at every visit to the cardiologist that she had passed all the tests and was prescribed medication that stabilized her, she made a decision.

“It was time to get back to normal life,” she said. “I thought, ‘I feel good. Why are you telling me I have this?’ So I got back to my life: work, take care of the kids, and take care of my husband.”

No one blinked or tried to steer her in a different direction, she said.

In March came the pandemic shutdown, a “blessing,” she said, because while losing her job was hard, it was great to “be home and take care of the kids” while her husband went back to work went to hospital to fight against his cancer. As stressful as it all sounds, she said she feels good at home and is confident in her health.

Then summer came. In July she fought

“I felt tired, exhausted and couldn’t eat properly,” she said.

But the postpartum heart diagnosis didn’t cross her mind.

“I didn’t really think it was my body,” she said. “I thought it was the summer heat. And, you know, taking care of two babies and a husband with cancer. That takes its toll.”

Then it got worse. “I couldn’t even lift my daughter’s legs to change a diaper,” she recalls.

She walked into the emergency room — in the midst of the pandemic — with swollen legs, nausea and exhaustion. Although she was told of the earlier diagnosis, they sent her home and told her to try a different diet.

Concerned, she tried to get in touch with a cardiologist, but the pandemic shutdown made that a challenge, too. She secured an appointment for late October and hoped for the best.

Five days after that visit to the ER, she suddenly fell and realized she was in trouble.

“I told my husband to call an ambulance,” she said.

The last thing she remembers is the intubation. She woke up on November 3rd to find that she had stage four heart failure and would need a heart transplant.

“It was very difficult to hear,” she said. “I didn’t understand how – at my age – I got to this point.”

That’s not an unusual way of thinking for someone her age.

“This underscores the importance of recognizing this condition and heart disease overall,” dr Eugene DePasqualea cardiologist with USC’s Keck Medicinewho treats Santos, told Healthline.

“The number one cause of death in the United States [based on data gathered pre-COVID-19] is a heart disease,” he said. “But if people are looking [based on their symptoms] They’re looking for ‘cancer,'” he said.

He said data suggests less than three percent of people who search for symptoms online are looking for heart disease.

The media, he said, spreads information about suicide, terrorist deaths and cancer, but not so much about heart disease.

In addition, he said, younger heart patients tend to exhibit other symptoms that are more focused on the gastrointestinal tract.

“Young patients in particular can be missed,” he said of the heart diagnosis. “Not only from the patient, but also from the [medical experts] also.

That’s why he and his team are thrilled that she’s sharing her story as she works toward a heart transplant.

“She’s a special woman,” he said. “We are very grateful to her. She’s been through quite a bit, but she still does stuff like that. She is part of our family and vice versa.”

Santos drove home with this backpack HeartMate pumpwho will do the work of a heart until she gets a transplant.

DePasquale said because during that second pregnancy, Santos developed antibodies that spur heart disease, which made her pool of donor hearts very small. On the Friday before Mother’s Day, they should start removing these antibodies from her.

She came home hopeful and grateful to be alive and ready to take care of her ailing husband again, who had been looking after the children with family help while she was recovering in hospital.

“I could sense he was on hold for me — he held on to his health to take care of things until I could,” she said.

She was right. She came home on December 29th. On January 16, they threw a happy third birthday party for their son.

A week later, her husband reported to a hospital. On February 27 he was at home in hospice care where he passed away soon after.

Still, Santos is grateful and positive.

“He gave me the strength to do this,” she said of raising two children as a widow, battling heart disease while awaiting a transplant, and being a heart health spokesperson.

“He did it for me and now it’s my turn to do it for him. I will keep this family going, make these kids happy.”

She works hard with her doctors to get to the heart transplant and speaks out.

DePasquale said she’s making a difference in more ways than she might even realize.

“We are so grateful to her,” he said. “She helps put that into perspective and encourages others to be proactive and fight to ensure symptoms are recognized.”

It, he said, also makes visible how well heart pumps can work. The HeartMate pump has been used by such high-profile people as former Vice President Dick Cheney, he said, but the power image of an everyday woman living with one could help many.

“It’s not as scary as some people think,” he said. “She can help people accept that better.”

Santos looks to the future with hope and a new heart.

Doctors told her she likely had signs of heart disease after giving birth to her first child. And while that might have meant avoiding some of the extreme diseases, it would have changed something else as well.

“They would have told me not to have any more children,” she said. “I might not have had my daughter. And you know, I wouldn’t change that for the world.”

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