Procedure Saves Young Girl’s Life as She’s Taken off Transplant Waiting List

No child should have to suffer, so nothing is more awesome than learning about an adorable kiddo who has beat the odds. That’s exactly what a 3-year-old Nashville, Tennessee, girl did when she came off the organ transplant wait list without having to undergo transplant surgery – a feat which doctors say is extremely rare.

Little Zoey Jones has been through more in her 3 years than most people go through in a lifetime. She has been through 13 surgeries, 3 open-heart surgeries, 7 cardiac arrests, 5 strokes, and the child has spent 23 months at the hospital. [1]

A rare defect known as VACTERL syndrome has tried to steal this little trooper’s life on many occasions, but the pudgy-faced wonder is tougher than nails.

VACTERL is an acronym for the characteristics of the syndrome that have been found to occur together, according to Cincinnati Children’s Hospital:

• V stands for vertebrae, the bones of the spinal column.
• A stands for imperforate anus or anal atresia, which refers to an anus that does not open to the outside of the body.
• C is added to the acronym to represent cardiac abnormalities.
• TE stands for tracheoesophageal fistula, which is a persistent connection between the trachea (the windpipe) and the esophagus (the feeding tube).
• R stands for renal or kidney anomalies.
• L is frequently added to describe limb anomalies (radial agenesis).

Children with VACTERL syndrome typically have at least 3 or more of these individual anomalies. An estimated 1 in 10,000 to 40,000 babies are born with the condition. [2]

When Zoey was born, her esophagus was not attached to her trachea, her small intestine wasn’t attached to her stomach, and she had serious heart and lung development issues. She underwent her first surgery when she was less than 24 hours old. She was constantly in and out of the hospital the first 2 years of her life. The little girl’s parents were told something that no parents ever want to hear: their child would need both a heart and lung transplant.

Mother Torri Goddard and father Blake Jones knew their daughter was facing an uphill battle early on.

“At our 20-week ultrasound, they found the heart problem – so we knew early on that she would have a heart condition,” Torri said. The couple was informed that their child likely had some form of congenital heart defect.

But Zoey’s health problems ended up being much worse, and she was born with VACTERL. She has 3 of the anomalies represented by the acronym: a “butterfly vertebrae,” which can result in scoliosis later in life, in addition to the cardiac and trachea-esophageal defects.

Zoey was born with a full heart, but the right side doesn’t function as well as the left, so all of the “squeezing power” comes from the left side, Torri explained.

The youngster’s health started deteriorating when she began undergoing medical procedures. Her heart started to expand, which pressed on her left lung and airway. Doctors were forced to place Zoey on a ventilator and a tracheostomy tube to allow her to breathe. That led to the devastating strokes and cardiac arrests. Her physicians at Vanderbilt University Medical Center eventually told Torri and Blake that Zoey’s best chance for survival was a lung and heart transplant.

In March 2015, Zoey was flown to The Heart Center at Nationwide Children’s Hospital in Columbus, Ohio, where doctors performed the incredible procedure that not only saved the girl’s life, but also took her off the transplant waiting list.

“In the [catheterization] lab, we found that blocking some of the blood flow to her lungs by using a vascular plug to close off one of her surgically-placed shunts lowered the pressure in her lung arteries enough that operating might be possible,” Dr. Darren Berman explained to the Daily Mail.

The doctors said they’d be able to do the surgery in just 2 weeks.

“She would have been on the lower end of the transplant list because she was somewhat stable,” Torri explained. “It wasn’t life or death for her right then, so she wouldn’t have been a priority until it became life or death.”

Torri and Blake were told to expect a long and difficult recovery, so Torri rented an apartment in Ohio, planning to live there for 2 months.

But the procedure was such a success that the family was able to return home just 10 days later.

Zoey’s physicians are pleased with her progress, but warn she may need a heart transplant when she gets older. For now, though, she gets to just be a child. She has learned to walk by herself, and she is learning to talk, which her tracheostomy tube had prevented her from doing.

“She acts like a three-year-old, and she wants to be a three-year-old,” Torri said. “She’s like a whole new girl.”

“Her progress lately has been amazing. Since we had her heart surgery, she has learned to walk by herself, and doctors told us she would never walk, and she’s walking unassisted now,” said Tori. “We have been able to wean her vent significantly, up to the point now where we’re actually starting to come off of it.”

At the end of the month, Zoey will travel back to Ohio for a follow-up visit. If all goes well, she will have another surgery to further improve her heart condition. [3]

So when you finish reading this, send up a prayer or a positive thought for Zoey Jones, and think of everything you have to be thankful for. If a 3-year-old can kick butt at life, anyone can.

Sources:

[1] KHON2

[2] Cincinnati Children’s Hospital

[3] Daily Mail