Avery

Two-year-old Avery's medical journey at N.C. Children's Hospital began even before birth. UNC's maternal-fetal specialists cared for her while in the womb, and teams of the Children's Hospital's pediatric specialists began caring for her the very minute she was born.

Head Start: Raeford toddler's Children's Hospital journey begins in utero

"You need to see this." Those words, spoken by a doctor at Danielle and Ricky's 16-week pregnancy ultrasound, are something the couple will never forget. Danielle immediately sensed something amiss.

The doctor turned the ultrasound monitor toward the worried mother. There she saw the sole of her unborn daughter, Avery's, foot. 

"You're only supposed to see a profile of a foot or hand at that point on an ultrasound, not the actual foot or sole," explains Danielle. More concerning, no matter how Danielle rolled or shook, baby Avery would not move.

After blood work and another ultrasound the following day, her doctors at
Womack Army Medical Center at Fort Bragg referred Danielle to the maternal-fetal specialists at UNC Health Care in Chapel Hill. While her amniocentesis at UNC came back normal, Danielle's caregivers wanted to keep a close eye on the pregnancy, and Danielle had frequent ultrasounds.

"Almost every ultrasound showed a new concern or possible problem," remembers Danielle. "One of the ultrasounds showed her hands turned in a weird position. She was also so little. Her head was measuring eight weeks ahead of her body. They were concerned about her chest size, heart development and lung development among other things. They started to notice too much amniotic fluid. Her chin looked under developed."

The couple planned ahead for Danielle's delivery at UNC, more than two hours from their home in Raeford, N.C. When their daughter was born, they wanted to be sure both mom and baby were in the best possible hands.

At 39 weeks, Danielle checked into UNC Hospitals to be induced. Several clinical teams from throughout N.C. Children's Hospital—pulmonary, ENT, cardiology, neurosurgery, general surgery and neonatal-perinatal medicine—were on alert awaiting baby Avery's arrival. After more than 36 hours of labor, and because Avery's heart rate was faltering, Avery was delivered by C-section.

"It was a big OR room, and every doctor from every specialty was set up at their own station with their own team of people," recalls Danielle.

Avery's pediatric care teams got to work immediately after delivery.

"I got a quick peek at her, and Ricky saw her right after she was born," says Danielle. "One of the nurses took a picture for us. Her hands were turned outward, and her legs were underneath her."

Avery was diagnosed with arthrogryposis multiplex congenita, a rare congenital disorder characterized by multiple joint contractures, or joints limited in range of motion that cannot fully straighten or bend. In the most common type of arthrogryposis, hands, wrists, elbows, shoulders, hips, feet and knees are affected. Avery's feet and wrists were affected most, but all of her joints showed signs of contracture.

Avery also was diagnosed with a congenital condition called Pierre Robin sequence, a chain of developmental malformations, including a small lower jaw (called micrognathia), U-shaped palate and breathing problems caused by the tongue rolling backward into the throat.

It was a lot for Danielle and Ricky to take in, but the competence of Avery's doctors put the first-time parents at immediate ease. Says Danielle, "They were all so on the ball."

Avery was less than an hour old during her first surgery with pediatric orthopaedic surgeon, Dr. Edmund Campion, and wore a cast when her mom first held her. At six days old, Avery had surgery to repair an umbilical hernia. At three weeks, surgeons placed a G-tube to aid feeding.

There were nearly countless challenges in those first weeks, but the family found comfort in the fact Avery was breathing on her own. Then, one day, Avery suddenly turned blue and unresponsive. Her tongue, larger than a typical newborn's, had slipped into her throat, blocking her airway.

To fix the problem, pediatric plastic surgeons tried a new procedure. They would cut Avery's jaw and move it forward, thus making space for her tongue and preventing it from obstructing her airway.

"She had 25 days of distraction," recalls Danielle. "We would have to turn tiny screws on her jaw twice a day. She was intubated and on a ventilator."

Pediatric ENT placed a tracheotomy to help Avery breathe, and she stayed an additional three weeks at the Children's Hospital thereafter, her parents learning how to care for her.

Finally, after spending the first three months and five days of her life in the Children's Hospital's Newborn Critical Care Center, Avery was discharged home.

Today Avery is a vivacious little girl and natural-born leader, according to Danielle.

"Avery is like a normal 2 year old," says the proud mother. "She has her toddler moments, but she responds well to reason and is very polite. I think it is because she has spent so much time around adults."

"It is hard to see her as disabled," adds Danielle. "She is fine mentally. Avery may have to scoot across the floor to play with the other kids, but she definitely is a leader. She is in charge."

Avery is still under the care of many of the doctors who cared for her during her first months of life. She and her parents travel more than two hours to the Children's Hospital for clinic visits about every two weeks, and there are more surgeries on the horizon. Still, the family has immense faith in Avery's care team.

In fact, Danielle jokes that the experience has inspired a loyalty to UNC that transcends the medical.

"My husband was always a Duke basketball fan," she says, "but he said that since UNC saved our daughter's life multiple times, he now owes it to UNC to pull for the Tar Heels."

More about Avery

Hometown:

Raeford, NC, Hoke County—about 160 miles roundtrip

Diagnosis:

Arthrogryposis multiplex congenita and Pierre Robin sequence (PRS)

Primary pediatric specialties:

Orthopaedics; pulmonology; otolaryngology/ENT; plastic surgery; anesthesiology

Other pediatric specialties seen:

Gastroenterology; speech pathology feeding team; cardiology; occupational therapy; genetics

Frequency of visits:

Clinical visit about every two weeks; inpatient stays as needed for surgeries

Favorite caregivers

Kim Guglielmo, Newborn Critical Care Center nurse; Lori Carter, case manager from the Special Infant Care Clinic (SICC); Dr. Edmund Campion, pediatric orthopaedic surgeon; Dr. John van Aalst, pediatric plastic surgeon

Favorite thing about N.C. Children's Hospital:

"I would have to say the people, definitely. Not just the doctors and nurses, it's everybody. The staff. The other patients and families. Every time we leave the Children's Hospital, we leave with somebody new in our lives." ~ Avery's mom, Danielle


UPDATE (provided via email by Avery's mom, Danielle): "Avery is doing very good! She is excited about her daddy being home from Korea. We are looking forward to the next few weeks, because Avery may be getting decannulated. She is doing well in physical therapy and is using a walker more and more. She loves her friends and family and is full of personality and spunk!!"

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