A mother of two, Zuleyma Santos, is working with the American Heart Association to raise awareness of the dangers of heart disease in young adults.
On paper, you’d think zuleyma santosnow 37, he had it all.
Two new children born in as many years. A career in retail that she loved. A dedicated and loving husband who despite having cancer was always there for her and a huge, close and supportive family.
It should have been the time of his life.
But within those developments came a blockbuster: Santos developed a rare and often fatal heart condition caused by pregnancy.
That’s why today he smiles as he adjusts the backpack he always carries on his shoulder, which contains 10 pounds of batteries, constantly running to keep the device that keeps his heart beating while he waits for a heart transplant.
Although there were signs, and a diagnosis, after her second child was born in 2019, no one realized the seriousness of the situation, and Santos, immersed in starting her life as a mother and focusing on cancer treatments her husband did not push.
“I feel like there were symptoms that didn’t respond,” he told Healthline. “I have always been a strong person. You’ll never hear me say ‘oh, it hurts’. That is not me.
That “get down to business” attitude could have proved fatal with the birth of their second child.
But it also launched her into a space she never thought she’d be in: a spokeswoman for the American Heart Association.
“I felt like I needed a way to reach people. To help them know how to 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 with dirty diapers running around my hospital bed. But here I am. And if I can be the voice they hear, knowing there are resources available, so be it.”
Santos was holding her two-day-old baby in the hospital when suddenly she could hardly breathe.
“I called the nurse and said ‘hold the baby, something is wrong with me!’ she remembered. “I couldn’t breathe and I thought she was losing her life.”
She was tested, tested, and then diagnosed. She was told it was peripartum cardiomyopathy, a form of heart failure that occurs during the last month of pregnancy or in the first few months postpartum.
The baby went home, but Santos stayed in the hospital for four more days. She was stabilized and told to rest and to see a cardiologist for follow-up once home.
She did, but since at each cardiology visit they told her that she had passed all the tests and put her on medication that stabilized her, she made a decision.
“It was time to get back to normal life,” he said. “I was like, ‘I feel good. Why are you telling me I have this? So I went back to my life: working, taking care of the children and taking care of my husband.”
No one blinked or tried to steer her in another direction, she said.
In March, the pandemic shutdown came, a “blessing,” she said, because while it was hard to lose her job, it was great “to be home and take care of the kids” while her husband went back to the hospital to fight his cancer. As stressful as it sounds to her, she said, she felt good being home and confident in her health.
Then summer came. By July, she was struggling,
“I felt fatigued, exhausted and couldn’t eat well,” she said.
But the postpartum heart diagnosis didn’t cross her mind.
“I really didn’t think it was my body,” he said. “I thought it was the summer heat. And you know, taking care of two babies and a husband battling cancer. It bills.”
Then it got worse. “I couldn’t even lift my daughter’s legs to change her diaper,” she recalled.
He went to the emergency room, in the middle of a pandemic, with swollen legs, nausea and exhaustion. Despite being told of the earlier diagnosis, she said, she was sent home and told to try eating differently.
Concerned, she tried to contact a cardiologist, but the pandemic shutdown also made it difficult. She got an appointment for the end of October and hoped for the best.
Five days after that ER visit, he suddenly spiraled down and realized he was in trouble.
“I told my husband to call an ambulance,” she said.
The last thing she remembers is being intubated. She woke up on November 3 and was told that she was in stage four heart failure and that she would need a heart transplant.
“It was very difficult to listen to,” he said. “I didn’t understand how I, at my age, got to this point.”
That’s not an unusual way of thinking for someone his age.
“The number one cause of death in the United States [based on data gathered pre-COVID-19] it is a heart disease,” he said. But when people search [based on their symptoms] they look for ‘cancer,’” he said.
He said the data suggests less than three percent of people searching for symptoms online are looking for heart disease.
The media, he said, promotes information about suicides, terrorist deaths and cancer, but not so much about heart disease.
In addition, he said, younger heart patients tend to have different symptoms, more focused on the gastrointestinal tract.
“Young patients, in particular, can be missed,” he said of the cardiac diagnosis. “Not only for the patient but for the [medical experts] as well as.
That’s why he and his team are thrilled to have her share her story as she works toward a heart transplant.
“She is a special woman,” he said. “We are very grateful for her. She’s been through a lot, but she keeps doing stuff like this. She is part of our family and vice versa.”
Santos went home with that backpack carrying it HeartMate Bombthat will do the work of a heart until you receive a transplant.
DePasquale said Santos developed antibodies during that second pregnancy that led to heart disease, making her pool of donor hearts very small. The Friday before Mother’s Day, they were to begin work to remove those antibodies.
She came home hopeful for that and grateful to be alive, as well as ready to take care of her sick husband, who had cared for the children with the help of the family while she recovered in the hospital.
“I could feel that he was waiting for me, holding on to his health to take care of things until I could,” he said.
She was right. She arrived home on December 29. On January 16, they organized a joyful third birthday party for her son.
A week later, her husband checked himself into a hospital. By February 27, she was home in hospice care where he passed away shortly 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 spokesperson for heart health.
“He did it for me, and now it’s my turn to do it for him. I’m going to keep this family going, keep these kids happy.”
She is working hard with her doctors to get to the heart transplant and talk.
Said DePasquale, she’s making a difference in more ways than she can imagine.
“We are very grateful to her,” he said. “She helps put this in perspective and encourages others to be proactive and fight for symptoms to be recognized.”
She also, she said, gives visibility to how well heart pumps can work. The HeartMate pump has been used by such well-known people as former Vice President Dick Cheney, she said, but the powerful image of an ordinary woman living with one could help many.
“It’s not as scary as some people think,” he said. “She can help people be more accepting of that.”
Santos looks to the future and a new heart with hope.
Doctors told her that she probably had signs of heart disease after the birth of her first child. And while that might have meant avoiding some of the extreme illnesses, something else would have changed as well.
“They would have told me not to have any more children,” he said. “Maybe I wouldn’t have had my daughter. And you know, I wouldn’t trade that for the world.”