Fahris Wyand: 5-year-old proves she has courage, heart

Five years ago in May, Brenda and Kevin Wyand of Bloomfield gave birth to their second baby girl.

“I kept repeating, ‘Is she perfect?’ over and over,” Brenda remembered.

I was hoping for 10 fingers, 10 toes. Never did I imagine that she could not have a perfect heart.”

But that’s exactly what the Wyands soon learned. Only moments later, a nurse at FF Thompson Hospital in Canandaigua noticed that newborn Fahris was slightly blue — a clue that her heart was not delivering the oxygen her body needed.

In a whirlwind, Fahris was transported to Golisano Children’s Hospital, where she was diagnosed with constellation of heart defects—hypoplastic right ventricle (an underdeveloped right side of the heart, resulting in inadequate blood to the lungs, and thus in Fahris’ blue coloring), hypoplastic pulmonary arteries (underdeveloped heart arteries that bring blood to the lungs), and total anomolous pulmonary venous return (oxygenated blood is returned to the wrong side of the heart, overworking the heart and depriving the rest of the body of oxygen).

“Essentially, she had only half a functioning heart,” said George Alfieris, M.D., director of Pediatric Cardiac Surgery at Golisano Children’s Hospital at Strong, and one of  New York’s busiest pediatric heart surgeons. “The stress on her heart was incompatible with life, so our first goal was to ease it and stablize her. Then she could go home, grow and prepare for two more major heart surgeries she’d undergo before the age of 5.”

Alfieris performed the initial phase of a three-step surgery when Fahris was only 2 weeks old, creating larger pulmonary arteries, reconnecting her pulmonary veins and providing adequate blood to her lungs through an artificial tube. For four weeks, the Wyands made the 40-minute trip to the hospital daily.

“There were stretches when Fahris was probably the sickest child here,” Alfieris said. “But her family was vigilant, supporting her at every turn.”

When Fahris was 4 months old she underwent the second stage of her open-heart surgeries. Alfieris completed a Bidirectional Glenn” — a procedure that allows the blood from the head and upper limbs to flow directly to the lungs, bypassing the underdeveloped right ventricle altogether and greatly relieving the strain on the half a heart she had.

Fahris spent two weeks recovering and for the next few years, periodic visits to cardiologists kept her healthy. Last September, when she was a little over four years old, she was stronger — and her veins were large enough — for her final surgery, the “Fontan.” Alfieris connected the large blood vessels (which are normally attached to the heart) directly to the lungs.

Fahris spent three weeks in the pediatric ICU, battling pneumonia and healing her rebuilt heart. She spent weeks on a ventilator, and at one point, needed surgery to remove scar tissue that had formed in her lungs and was pocketing fluid, making it even harder for her to breathe.

“I turned to Fahris and asked her, How do you stay so brave and strong?’” Wyand said. “And she said ‘Mommy, I just take a deep breath in.’ Her wisdom stunned me. How could someone so small be so bold?”

In mid-November, after 79 days in the hospital, Fahris was discharged with a chest tube to collect fluids draining from her lungs, a specially inserted home IV (PICC line) and oxygen.

Just before Christmas, she spent three days in the hospital battling an infection in her PICC line — both that line and her chest tube were soon removed. After that, she began returning weekly or bi-weekly to have fluid removed from her lungs.

“Her heart is growing stronger, but this marathon of surgeries was draining. We still rely on other’s people’s strength —our friends, our nurses, our doctors,” Wyand said. “Everyone at the hospital — even the housekeepers — is rooting for her.”

Today, Fahris has good days and hard days. On the good ones, she catches frogs in the creek behind her house with her older sister, Morgan, or pieces together puzzles, or colors.

“She’s outgoing and likes to explore,” Wyand said. “She’s so joyful. In spite of everything, she soldiers on, knowing nothing different. She’s quite matter-of-fact about all of this, telling us it is worth it — ‘It’s going to help my heart boo-boo,’ she reminds us.”

Alfieris is also optimistic that better days await Fahris. “We’re hopeful that soon, she’ll be able to live an active childhood and a full life,” he said.