All Children's Hospital Telethon

Faith



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She's three years old, but actually Faith has been an All Children's patient for longer than that. Back when Faith's mom was 20-weeks pregnant, she had an ultrasound -"because as an older mom, I was worried about Down Syndrome." When the chatty sonographer turned quiet, she knew something was wrong.

"My heart was just pounding," mom Tina recalls, "wondering - like, oh no! Is it the heart?"

A day later, at All Children's Fetal Echocardiography Lab, Tina's fears were both confirmed and, to some extent, eased.

"In the fifth month of pregnancy, we can make an accurate diagnosis of a congenital heart defect about 95% of the time," explains James Huhta, MD, Director of All Children's Perinatal Cardiology Program. "So there's a lot of confidence that we can say what the type of heart disease is anatomically and then with our other tools - Doppler tools of measuring blood velocity and so forth - we can say something about the function and the potential of the heart disease to affect the pregnancy."

"In this case, we did a fetal echocardiogram and confirmed that Faith had a form of congenital heart defect that just had one ventricle called tricuspid atresia."

That's pretty incredible when you consider that the ultrasound is looking inside a mother's womb - and inside the fetus - at a heart the size of your thumbnail. Even better, using a special scale developed by Huhta and his cohorts at the University of South Florida School of Medicine, they knew this defect was unlikely to threaten the pregnancy.

"Then we talked about the fact that this is something that looks like it came right out of a cookie cutter," says Huhta. "Other kids with tricuspid atresia look very, very much like this. So we have enough experience based on thousands of children who went before as to what we can expect. And we also know what our surgical treatments can achieve."

"And that told us - it's not the end of the world," recalls dad Paul. "It's serious, but it gave us some hope."

It also gave them a whole new group of people to add to Faith's care team, including Pediatric Heart Surgeon Jeff Jacobs, MD.

"We sat in the office and had a pretty long talk about all the surgery she'd be facing down the road," Jacobs recalls.

"While most people's hearts are formed with two pumps - one to pump blood to the body and one to pump blood to the lungs - Faith only had one useful pump. We had to rearrange her circulation so that her single pump could pump both to the body and to the lungs. And that typically takes a series of three surgeries throughout the first three years of life."

Faith made her first trip to All Children's O-R when she was barely weeks old.

"The first surgery," recalls Tina, "I was crying like a little baby. The second and third surgeries - I had no problems with them. I knew that she would be fine. I had all the faith in Dr. Jacobs. And I knew she would be fine."

"One of the biggest challenges that pediatric heart surgeons face is that a lot of children we take care of require multiple surgeries," says Jacobs. "Every operation after the first operation begins with having to deal with severe scar tissue around the heart. And that's just what we as surgeons face."

"The challenges of taking care of a baby like Faith are difficult. They require a multi-disciplinary team of cardiologists, cardiac ICU doctors, anesthesiologists, nurses, perfusionists, and a facility where all those people can come together and work. And there are few places in Florida that have the team to do the job properly the way All Children's has."

It's a team where everyone seems to know and love Faith - from the nurse in pre-op holding who calls her "Miss Faith" to the Child Life therapist in Cardiovascular ICU who helps to distract her through tough times like IV removal.

It's also a team that hopefully won't be seeing Faith again anytime soon. The final stage of the surgical repair took place last November at All Children's.

"I don't go there anymore," Faith now says, "because Dr. Jacobs fixed my heart."

"We're hoping this third operation is the last one," Jacobs says. "We tell the parents there is a possibility another operation might be needed later in life, even in adulthood. We really don't know the ultimate long term because the oldest patients who have had this are now in their forties. But by the time Faith reaches that age, science and surgical techniques may be so much better that we'll have a lot more to offer."

That's why it's so important to have people on Faith's team like Dr. Huhta, who also holds the Daicoff-Andrews Endowed Chair in Perinatal Cardiology Research at the USF/All Children's Research Institute. Someday, he imagines, maybe we'll be able to fix problems before kids like Faith are born -- without ever doing surgery.

For now, says dad Paul, "it's hard to imagine what would have happened if All Children's wasn't there. Everybody thinks - this is never going to happen to me. But, believe me, sometimes it does happen to you. You may end up needing the services of this great hospital. So, any support you can give would be greatly appreciated by the people who need it now -- and by the people like you who may need it in the future."



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