Tatum Henderson - family portraitAt their 20-week ultrasound, Jamie and Cale Henderson were excited to learn they would be welcoming a baby girl.

The other news that day wasn’t as joyous.

Their unborn daughter had several problems with her heart. Doctors didn’t yet know the full extent of the condition.

“It was devastating,” Jamie said. “I thought I was going to carry a child that wasn’t going to live and I didn’t know where to go for help.”

The couple from Cedar Rapids, Iowa, was referred to a pediatric cardiologist at the University of Iowa. Every few weeks, specialized ultrasounds and fetal echocardiograms provided more information as the baby – to be named Tatum – developed.

“We were just hanging on from ultrasound to ultrasound, wondering what we’d learn next,” Jamie said.

The ultrasounds pointed to several possibilities, though nothing clear-cut. Yet the conversations with the pediatric heart surgeon gave Jamie and Cale hope.

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Tatum was born July 4, 2011, weighing 6 pounds, 2 ounces. She also was very blue.

She was put on oxygen and whisked into the neonatal intensive care unit.Tatum Henderson in hospital 2

She underwent an echocardiogram shortly after being born. The next day, doctors performed a catheterization procedure to get a clearer picture of how her heart was wired.

The official diagnosis was “Tetralogy of Fallot,” a heart defect with several different problems. Tatum’s case was a variation, combining a rare set of factors that would be difficult for doctors to repair.

For instance, her pulmonary arteries – which are supposed to take blood to the lungs – weren’t doing their jobs, so the heart developed additional vessels to compensate. But those vessels didn’t have the capacity Tatum’s heart needed, keeping her body from getting enough oxygen; that’s why she was blue. She also didn’t have a pulmonary valve.

“She was born suffocating, basically,” Jamie said.

Tatum underwent open-heart surgery when she was eight days old. She remained hospitalized for a month, then went home hooked up to oxygen tanks.

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A month later, Tatum underwent another catheterization procedure to see how things were progressing.

Her pulmonary arteries weren’t growing as doctors hoped, but the other vessels were continuing to grow. The surgeon at the University of Iowa felt he could make the repairs needed, but it would take at least two surgeries. The family was referred to a specialist at the Lucile Packard Children’s Hospital at Stanford University in Palo Alto, California, who could possibly do it in one.

They flew west in mid-December. The surgery took nearly 11 hours.

And it worked. Tatum spent eight days in the hospital, much of it spent with her body learning how to function with a heart that was now functioning in a new, better way.

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Tatum Henderson playingOnce home in Iowa, Tatum received oxygen at night only for the first few weeks as her heart and lungs healed.

Since then, Tatum has mostly become a normal toddler – jumping and doing gymnastics, although weight gain remains a challenge.

Tatum undergoes an echocardiogram every six months and a heart catheterization; her next checkup is later this month. She’ll soon need a new pulmonary valve. Hers leaks because she is outgrowing it. She likely will need a few more replacements throughout her life.

“She’s sliding around on her tummy in the dining room right now, doing Facetime with her Grandma,” Jamie said. “She’s just a ball of fire.”

Jamie says Tatum’s journey has given the family a new appreciation for the research supported by the American Heart Association.Tatum Henderson 1

The American Heart Association funds more cardiovascular research than any organization outside the federal government, having invested in excess of $3.7 billion, including more than $100 million annually since 1996. 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.

Last year, the Hendersons participated in their local Heart Walk and Tatum was the ambassador of this year’s event. The Hendersons also shared Tatum’s story at the Heart Ball in February. (Watch a video shown that night featuring the stories of Tatum and recent “Stories from the Heart” featuree Scott Sanborn.)

“The AHA gives us a place to belong and where other families can relate in some way, or many ways, to our situation and us to theirs,” Jamie said. “Heart complications do not discriminate based on age, gender, etc., and the AHA offers support for all. By raising awareness we raise dollars, with those dollars additional research is funded, and research saves lives.”

jamie-tatum-henderson-heartwalk-2013

Jamie holding Tatum at their 2013 Heart Walk

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Photos courtesy of Jamie and Cale Henderson

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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.

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