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More Than a Number
When the Cope family goes to count their blessings, they count one 5-year-old, one extra chromosome and one Children’s Hospital.
Five-year-old Jaxson lives with a rare genetic condition called trisomy 9q. He was born with part of an extra chromosome, which his doctor in the Neonatal Intensive Care Unit (NICU) at East Tennessee Children’s Hospital was able to diagnose early. Within two weeks of welcoming their son into the world, new parents Rachael and Drew learned that Jaxson’s often-fatal condition is so rare, there isn’t much research on treating it. Luckily, they have a team of experts at Children’s Hospital to help them face every new challenge.
Trisomy 9q occurs when the entire 9th chromosome appears three times rather than twice in some cells. One segment of the chromosome (Q) is in duplication. Among other things, the disease causes an array of developmental disorders and malformations that vary from patient to patient.
In Jaxson’s case, he was born with a blockage in his digestive tract, which required multiple surgeries at Children’s Hospital. He still requires a gastrointestinal tube (G-tube) for feeding, but he attends weekly therapies to learn how to swallow and eat on his own.
Jaxson also has some developmental delays. He did not learn to walk until he was 26 months old, but now he runs and jumps like any other five-year-old. And although he is unable to speak, Jaxson has found a way to communicate through sound and sign language.
Although there is little information on trisomy 9q, the Copes are encouraged by the patient-focused care they receive at Children’s Hospital.
“We are writing our own rulebook with Jaxson and Children’s Hospital has helped us do that,” says Rachael.
A miracle baby
Jaxson came into this world early, a week before Christmas, but his journey could have ended before it began.
In the final stages of pregnancy, Rachael suddenly lost her amniotic fluid, which is the nutrient-rich fluid surrounding the baby in the womb. Typically, a baby who loses its central source of nutrients wouldn’t survive, but Jaxson miraculously did. It wasn’t until after Jaxson was born that the Corryton couple realized the intestinal blockage caused by his rare trisomy 9q was most likely what saved his life in the womb.
“He’s our miracle baby. This thing that has caused so many problems is also the thing that saved his life.” - Drew Cope
Following his premature birth, Jaxson spent 70 days in the NICU, fighting for life. The Copes worked with their primary care
team to create a road map for Jaxson.
“We worked through Jaxson’s care little by little, one day at a time,” says NICU nurse Elizabeth Cayce.
Because of his fragile state, Rachael and Drew were unable to hold Jaxson until nearly ten weeks later. One snowy morning, just days before they were scheduled to be discharged from the NICU, Elizabeth offered the family the greatest gift she could: a chance to hold their son for the first time.
“It was our first Christmas present as parents, and that was all we could have asked for,” said Drew.
Shining his light
Living with a rare genetic condition can be intimidating, but because of his parents’ attentive dedication, Jaxson is thriving. In his first four years of life, Jaxson has had 12 surgeries, made numerous inpatient stays for various illnesses, and has had more than a few trips to the Children’s Hospital emergency department. He lives with a feeding tube and attends up to three hours of therapies per week.
“Jaxson does have a lot of medical issues related to his medical disorder,” says Dr. Kelly Boggan, Jaxson’s pediatrician, “but he’s certainly up to the challenge.”
Dr. Boggan has worked with the Copes since Jaxson was released from the NICU. She coordinates his care between her practice at Children’s Hospital Primary Care and the many specialists he sees at Children’s Hospital.
“Even from that very first visit at two months of age, he just had this smile that steals your heart,” says Boggan.
Jaxson has touched nearly every department at Children’s Hospital so far. From the emergency department to the inpatient floors, nurses and doctors will make a special effort to visit with the bouncy redhead and his parents.
Jaxson is admitted to Children’s Hospital at least once a year, and in those instances, the nurse who knows him best volunteers to be his primary nurse, so that he and his parents have consistent, familiar care.
“I really love Rachael and Drew,” Elizabeth says. “They’re awesome parents, and Jaxson is so fun to take care of.”
Jaxson’s personality is magnetic. “Even if you have never met him before, you are bound to fall in love with him,” adds Rachael.
Jaxson spent 70 days in the NICU at Children’s Hospital
The Cope family has spent 3 out of 4 Christmases at Children’s Hospital, battling life-threatening conditions
Dr. Boggan, Jaxson’s primary care physician, coordinates the many specialists and therapies Jaxson needs to reach his fullest potential
Jaxson takes a ride in his favorite red wagon
Jaxson’s parents are writing their own rule book for his rare genetic disorder
What does the future hold in store for Jaxson?
“All we want for Jaxson is for him to live a happy life,” says Rachael. She and Drew work tirelessly with Jaxson on his language and motor skills and the lessons they receive in his speech and physical therapies. They have also enrolled him in pre-K at a local school that offers inclusive special needs classrooms. That means Jaxson can learn and develop with children his age, regardless of disability. Since starting school, Jaxson has blossomed even more into his bright personality.
Thanks to the occupational therapy he receives, Jaxson has started to learn how to eat solid foods and will eventually have his G-tube removed. It is unknown whether Jaxson will gain the ability to speak, but his parents are determined to help him develop his communication skills to their fullest potential.
“Jaxson will always struggle with development and growth problems, but he has already come so far in his five years,” says Dr. Boggan. “The sky is the limit with him.”
Jaxson’s extra chromosome has brought with it an added brightness to their family.
Jaxson continues to thrive and impact everyone he meets. He’s leaping through milestones and changing the way trisomy patients are treated. East Tennessee Children’s Hospital is proud to have been a home for Jaxson during his most fragile times. As he continues to grow, the hospital will always be there to welcome him with open arms for routine checkups or just a smile.
It’s About Children is produced by the Marketing Department at East Tennessee Children’s Hospital.
Editor: Leandra Wilkins
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