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Chaumont baby with rare conditions is scheduled for many surgeries

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CHAUMONT — At just 3 months old, Brenna R. Flynn already has become one of the rarest medical cases that pediatric heart surgeon George M. Alfieris has seen in his 20-year career.

Within hours of her birth Aug. 23 at Carthage Area Hospital, the 6-pound, 13-ounce baby was rushed to Crouse Hospital, Syracuse, with a heart murmur. Her mother, Kiley J. Taylor, left the Carthage hospital early against doctors’ wishes to be by Brenna’s side, although she knew heart murmurs often occur in babies. She was accompanied by her fiance, the baby’s father, C. Zack Flynn.

Ms. Taylor said she didn’t realize the extent of Brenna’s health problems until the staff at Crouse completed an ultrasound of the baby’s heart and found several major defects.

“She had no aortic arch,” Ms. Taylor said. “If you don’t have that, blood can’t flow to your body. They told us most of these babies, unless this is found on an ultrasound, get sent home and die within a few days.”

It also was discovered that Brenna had truncus arteriosus, a rare heart disease found at birth, “in which a single blood vessel comes out of the right and left ventricles, instead of the normal two vessels, pulmonary artery and aorta,” according to the U.S. National Library of Medicine.

On the way to Syracuse, Brenna was given a medication to help her blood flow. Ms. Taylor said the Crouse nurse’s quick response in knowing what medication her daughter should have on the way to Syracuse may have saved Brenna’s life.

Worry turned into panic and heartache after tests were complete at Crouse and Ms. Taylor and Mr. Flynn received an update on Brenna’s condition.

“The doctor pulled us into a private room, and he broke it down of what was wrong with her and blatantly told us, ‘Without surgery, your baby won’t survive,’” Ms. Taylor said.

They were told the best surgeon for this type of case — Dr. Alfieris — was on vacation. After being kept on the same medicine for the next week and a half to keep her blood flowing, Brenna was sent to the University of Rochester Medical Center so Dr. Alfieris could perform the vital surgery.

But the day before surgery, Ms. Taylor said, at least three cardiologists told her and Mr. Flynn that there was a chance Dr. Alfieris “would have nothing to work with” once Brenna’s chest was open.

“We sent her to surgery thinking we’d never see her again,” Ms. Taylor said. “She was 10 minutes that day in complete cardiac arrest — she was clinically dead for 10 minutes, but did pretty good at coming back.”

Once Dr. Alfieris opened up Brenna’s chest, another shock was discovered: Brenna also had a hole in her heart.

“I’ve probably seen that whole combination once or twice in my career, and I’ve been doing this since 1992,” Dr. Alfieris said. “It’s an unusual combination to have.”

Brenna also was born with a deformed right ear, something that often goes along with heart troubles, Ms. Taylor said.

Not all of Brenna’s problems could be resolved during that Sept. 4 surgery.

“We fixed the arch and gave her a reasonable amount of blood to her heart, but she still has the hole in her heart,” said Regina Cable, a pediatric nurse practitioner at Rochester who helped Brenna following surgery.

Mrs. Cable said Dr. Alfieris wants to wait as long as possible before Brenna’s second open-heart surgery, but that will depend on how Brenna handles the first repair.

Ms. Taylor said that although she had hoped Brenna would not have to have another open-heart operation until she was nearly 2 years old, Brenna already has lost 40 percent of her repair function and will need more surgery before her first birthday next August.

That will be one of many operations Brenna will have to undergo until she becomes an adult. Ms. Taylor said a conduit — a plastic tube from the upper part of Brenna’s heart to the lower part — will have to be replaced as she grows. She also may have a pig valve put in; she was too small in September to go through such a procedure.

Mrs. Cable said Brenna’s next surgery will repair the hole in her heart and replace the conduit she has now.

Even after the surgeries are over, Brenna will require a lot of care, as she will always have to see a pediatric cardiologist, Mrs. Cable said.

“She’ll never have a normal heart,” she said.

Brenna sees a pediatric cardiologist about once a month. Dr. Alfieris said follow-up care is critical in monitoring her condition as she grows.

For now, her family won’t care for her in the way typical 3-month-olds are cared for, Ms. Taylor said. The new normal, she said, is for Brenna to receive medication and baby formula through a tube into her stomach as she spends her days at her Academy Street home. Since she consumes less than 2 ounces at each feeding, she has to be woken up to be fed through the tube every two or three hours; she wasn’t taking enough by mouth to grow.

The stresses are mounting for the Taylor/Flynn family. Both Ms. Taylor and Mr. Flynn have been out of work to care for Brenna around the clock, and Ms. Taylor’s car broke down at the same time.

But through it all, the couple’s three daughters from previous relationships, along with other relatives, have helped to keep a tight-knit support system together. Through all of the ups and downs, tears and pain, Brenna has taught her to cherish every moment together, Ms. Taylor said.

“Her eyes are so bright and very blue; they’re not giving up,” Ms. Taylor said. “I promised Brenna I’d never gripe when we’ve had sleepless nights. I’m so lucky — there were so many mothers who didn’t get to hear their babies cry.”

Ms. Taylor said she wanted to share her story to encourage all mothers-to-be to ask more questions at their 20-week checkups and request any scans they feel are needed.

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