CONWAY, Ark. (AP) — A Conway family came together Feb. 9 to welcome home one of their newest members.
Ten-month-old Avery Stewart arrived by chartered jet into Conway Municipal Airport at around 1 p.m. after a six month stay at Texas Children’s Hospital.
There to greet her were many members of her family including her parents, Jake and Ashley Stewart, and with older brother Jack, 4, and twin sister Ella.
“We were shocked. We weren’t expecting twins at all,” Ashley said of finding out, “I was hoping for a girl for sure, and we were so surprised to find out that we would be having two girls.”
Avery and Ella were born 12 weeks premature on April 14, 2017 at UAMS, but were transferred to Arkansas Children’s Hospital to undergo multiple surgeries.
Ella underwent Patent Ductus Arteriosus surgery and had to have a third of her colon removed.
Patent Ductus Arteriosus (PDA) is a condition mostly seen in premature babies. It occurs when the ductus arteriosus, or the blood vessel present in babies still in the womb that allows blood to bypass the pathways to the lungs, doesn’t close after birth.
Ella spent a total of 105 days in Arkansas Children’s Hospital.
Avery, however, had a longer journey ahead of her.
About a week after she was born, they discovered that Avery’s right pulmonary artery had formed in the wrong location and never attached to her main pulmonary artery.
At 4 months old, Avery developed severe Pulmonary Hypertension causing right ventricle shut down.
Pulmonary Hypertension (PH) is a type of high blood pressure that affects the arteries in the lungs and the right side of the heart.
As the pressure builds, the heart has to work harder to pump blood, resulting in weakening of the muscle and sometimes failure.
Avery was flown into Texas Children’s Hospital, where they have a fully staffed PH team.
“NICU life was a whole new world of tiny babies smaller than you could imagine,” said Michella Gillum, Avery’s grandmother.
“Survival that’s all we wanted to accomplish. What comes next? What to expect? It all depends on the baby’s will and we had no idea how much this would come into play with Avery’s diagnosis,” said Gillum.
In her six month stay in TCH’s NICU, Avery underwent open heart surgery that the Texas hospital had never before found successful in preemies.
Gillum told the Log Cabin that the surgery was “probably one of (the family’s) biggest hurdles and risks,” since no prior studies proved benefit over risk.
According to the family, Avery is the only premature baby that has survived long enough for surgery to correct her right pulmonary artery.
“Her condition is really rare,” said Ashley, “She’s the only premature baby that they (TCH) know of to have this issue that has actually survived.”
The family said that Avery is part of an exclusive PH medical research study with partnering Baylor Research Hospital and that medical journals and articles are being presented at medical summits, explaining her pathway to overcoming a once thought fatal prognosis.
The family hopes that Avery’s case can pave a way for more successful outcomes in children with the condition.
“Don’t ever lose hope. Keep asking questions and don’t rely on (professional) advice alone. Advocate every day, take notes, take pictures, cry if you need to, but never (give up),” advised Avery’s grandmother.
She will continue to be monitored indefinitely, and will likely need future procedures to check her pressures, lungs and heart, but after 6 months in Texas Children’s Hospital NICU, baby Avery is home, and her family is whole once again.
“I’m just glad to get her home after being away for 300 days, in three different hospitals. I’m just so glad that we are all going to be together,” said Ashley.