Saturday 20 Sep 2014

Information and opinions presented here do not always represent the views of the American Heart Association.

STORIES FROM THE HEART: Like mother, like daughter – emotionally strong duo battle rare forms of heart disease

Published: 2:14 pm CDT, April 10, 2014

Keyota Cole was born with a hole in her heart and an abnormal valve. At 18 months old, she had her first open-heart surgery.

Keyota underwent a second heart surgery at age 5. Then as a teenager and young adult, she had additional procedures, including valve replacement surgery and the implanting of a pacemaker by her early 30s.

“It was just something that I was used to,” she said. “I may have cried once or twice, but I didn’t really think about it much.”

The emotional strength became her calling card. A strong faith in God helped, too.

Her resilience was tested again following her most recent surgery, in late spring 2011. Keyota received the wonderful news that she was pregnant – and the crushing news that her doctor urged her to terminate the pregnancy. The doctor considered it just too risky for her health.

So Keyota got a new doctor, one she’d worked with before at the UCLA Medical Center in Los Angeles, and set out on a high-risk, high-reward journey.

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Keyota already had a daughter, Keyarria. And now another little girl was on the way.

About five months along, doctors discovered a heart defect in the baby Keyota was carrying. Only one of the heart’s two pumping chambers were working properly.

Keyota learned that the condition her baby faced afflicts about five in every 100,000 infants. Her own condition was even more rare. The thought that one or both of them might not make it was almost unbearable.

“I still get teary-eyed when I start talking about it and I start remembering,” she said. “It was really rough.”

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When it was time to deliver, at full term, labor inducement didn’t work immediately. Her baby was under stress, so doctors performed an emergency Cesarean section.

Keyota had considered a number of names for her child. She chose “Faith.”

“It was just I had so much faith that He was going to pull me through,” Keyota said of her trust in God.

For her first six days, Faith was kept in conditions resembling those of the womb. She then underwent a crucial operation. She remained in the hospital about a month.

“Taking her home, it was kind of scary at the beginning,” Keyota recalled. She had to administer medicine and weigh Faith daily while constantly reporting on her condition by phone to the doctor’s office in Los Angeles.

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Five months after her initial operation, known as a Norwood procedure, little Faith had her second heart surgery, a Glenn procedure to manually connect the top of her heart to the bottom.

Faith recently turned 2, an important milestone for children with her condition. She is expected to have one more surgery when she is about 3, and Keyota hopes that is her last.

Even if her daughter faces physical limitations in life, she wants her to always try to do what she desires.

Keyota, now 35, also hopes she has experienced her last heart surgery, though she expects there may be more procedures, such as an update for her pacemaker when the battery wears out.

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Now living in Palmdale, near Los Angeles, Keyota remains busy caring for Faith, an energetic toddler who likes to jump and run; 14-year-old Keyarria; and a third daughter, 5-year-old London, who was adopted from foster care.

Keyota also spends time volunteering with the American Heart Association. She shares her story though promotional messages and at various events. She has participated in a Go Red For Women event and a Heart Walk, and recently she and Faith were featured in a charity campaign through the Stater Bros. grocery stores.

Keyota feels a responsibility to help others and to promote heart disease research. She knows the American Heart Association is leading the way, having invested in excess of $3.5 billion into cardiovascular research, which is more than any entity outside the federal government. The organization has funded research by 13 Nobel Prize winners and has been part of many lifesaving advancements such as the first artificial heart valve, cholesterol-inhibiting drugs, heart transplantation, and CPR techniques and guidelines.

Her story is so unique that UCLA Medical Center featured her in a documentary. The idea, she said, was to instill in other women the attitude: “If she can do it, then I can, too.”

“I want to try to give back to other women, to let them know: Giving up is not the option,” she said. “Just don’t give up.”

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Photos courtesy of Keyota Cole

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Do you know a “Story from the Heart” we should tell? 

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Previous “Stories from the Heart” include:

Gulf War veteran recovers from heart attack to run marathon; he dedicates race to his cardiologist

This stroke survivor is dedicated to helping others beat, avoid stroke

17 days before co-chairing Heart Walk, he underwent open-heart surgery