While Maria was pregnant with her son Chase, she and her husband went to an ultrasound booth at the mall. They thought it would be fun to find out the gender of their baby. The ultrasound revealed a cleft lip and the tech told them to go to their regular doctor and get that checked out. Maria’s doctor sent her to their 20-week ultrasound a little early. Unfortunately, the ultrasound also revealed some umbilical cord abnormalities. After Chase was born, testing revealed he was missing part of a 9th chromosome on the Q branch, known as Chromosomal Deletion 9Q. No one else in the world has Chase’s exact condition.
Rare Genetic Diagnosis Brings Challenges
Since Chromosomal Deletion 9Q is such a rare condition, doctors couldn’t tell Brandon and Maria what to expect with Chase in and out of utero. They received more bad news at every ultrasound appointment. This got discouraging at times but Brandon makes it a point to not dwell on the negative. “I just wanted him to be here as healthy as he could be,” Brandon said. Chase was going to be born with many medical problems. But Brandon and Maria were going to love him, diagnoses and all.
“He’s an easy kid, but the hard part is how busy he keeps us,” Maria said. Over the course of Chase’s life, he’s seen 15 specialists, has had 10 surgeries and has several appointments a week with doctors and therapists.
In addition to the complications from his Chromosomal Deletion 9Q diagnosis, his parents have a lot on their plate with his cleft lip and palate. His lip and soft palate have been fixed so far but his hard palate is still open. “We are starting solid foods here and there, but he does a lot better just being tube-fed,” Maria said.
Child’s Happiness Means the World to Parents
Chase has physical limitations because of his diagnosis. He cannot talk, see, or hear well but he is such a happy boy. “He gives hugs, and if he’s close to you, he’ll just grab you and hold on really, really tight,” Brandon said. Chase loves being on the floor and will play in his own little world, smiling and making noises the whole time.
A baby’s smile brings parents a lot of happiness. It took about eight months before Chase started smiling consistently so his smile is extra special for his parents. “Any time he smiles today, it lights us both up,” Maria said.
Chase’s older and younger brothers adore him, despite his disabilities. They are the best of friends and hopefully, they will stay that way for years to come. “He teaches us new things every day like patience and deeper amounts of love,” Maria said.
Words of Advice When Child’s Condition has a Lot of Unknowns
Because Chromosomal Deletion 9Q is so rare, Brandon and Maria are aware of the fact that Chase may not live a very long life. Doctors do not know all the challenges Chase will face, let alone his life expectancy. “You can’t dwell on the negative, you’ve got to take things one day at a time,” Brandon said. If you see your child’s diagnosis and their life as a bad thing, you will miss out on all the joyous moments.
In order to avoid potentially negative circumstances from happening to your child, you have to think about their needs first. “You have to put him/her at the forefront of any decision that you make in your life,” Brandon said. This applies to where you live or what job you take. Brandon and Maria made it a point to live close to a qualified, children’s hospital to make their lives easier with all of Chase’s surgeries, appointments, and medical emergencies.
Being open to answering questions about your child will benefit you, your child, and others. Parents often teach their children not to stare at kids who are different because it is “rude”. The child, however, is not trying to be rude, they’re just curious. When they go to school and see another classmate with a disability, they will think they need to look away and not become their friend. “I would encourage people to ask questions and to encourage your kids to ask questions and befriend them,” Maria said. Your child with a disability is still a person and they just want to be loved and accepted.