Photo Credit: Trinnica Photography
Jackson was born December 21, 2007. Shortly after birth, Jackson was diagnosed with Gastroesophageal Reflux Disease (GERD), aspiration, and congenital heart defects. Our journey with Jackson’s feeding challenges started with the diagnosis of GERD and aspiration. GERD causes inflammation, pain, and other serious complications of the esophagus and results when acid refluxes from the stomach back into the esophagus. That, combined with a swallow study showing he was aspirating into his lungs, resulted in Jackson’s first surgery when he was 3 weeks old (placement of a feeding tube, as well as a fundoplication).
A fundo is when the stomach that is closest to the entry of the esophagus is gathered, wrapped, and sutured around the lower end of the esophagus and the lower esophageal sphincter (which increases pressure at the lower end of the esophagus and thereby reduces acid reflux). What a fundo also did was prohibit Jackson from burping and/or vomiting. Typically, a child will outgrow a fundo as he/she develops; however, it can take several years. In fact, Jackson will be 5 this December and he still does not burp or vomit – instead, he burps through his feeding tube, called a MIK-KEY button.
Jackson has struggled with digestive issues since birth and his overall development and energy level was very low the first couple of years. We spent a lot of time trying to get Jackson healthy - in the midst of his digestive struggles, Jackson also needed to have open-heart surgery to repair his congenital heart defects, as well as a series of serious illnesses requiring many hospitalizations.
But Jackson is a fighter and his health began to improve – he was given medical clearance to start oral feedings. It quickly became apparent that he needed intense treatment to help him understand how to eat because the concept was completely foreign to him. If he was hungry, he would lift up his shirt and point to his MIC-Key button. Jackson also missed the critical phase of developing a suck/swallow/breathe pattern, so we have spent years with different therapists, doctors and nutritionists creating plans to teach him how to eat/drink orally.
Jackson & his brothers, just before the Buddy Walk
More Alike than Different
Eating was not a pleasurable experience for Jackson. He associated food with pain; therefore, during the early months of trying to teach him to eat he displayed his anxiety by screaming, crying and gagging. In fact, it took several months for Jackson to willingly sit at the table with us while we ate. After accomplishing that, we transitioned to playing with food, followed by tasting food. Eventually Jackson learned that he really did like the flavor and texture of food, but he still didn’t know what to do with it. He would taste it, then spit it out and he would never allow us to approach his face with a spoon. His medical team was stumped on how to move forward, and eventually his speech therapist recommended an inpatient feeding program at Our Children’s House at Baylor (OCH) in Dallas, TX.
Our journey with OCH was intense to say the least. Leaving family, friends and the comforts of home was hard on everyone. To some, it may seem extreme to go inpatient for weeks over feeding issues. It is hard to explain just how difficult and emotionally draining feeding challenges are – not just on the child, but on everyone in the family. After four years, we were desperate for help and OCH was the next natural step.
Initially, I was not allowed to participate in his treatment. For 2 weeks, the medical team completed 5 feeding sessions per day, plus additional daily occupational and physical therapy. It was a difficult environment for Jackson to be in considering he has a lot of anxiety being in a hospital and dealing with nurses and doctors (I would be too if I had been through everything he has!). But, things started to slowly turn around. He went from screaming every session to learning the protocol and understanding what he should do. After 2 weeks, I was allowed to watch through an observation room window…..for the first time I saw my son lean forward and take a bite off a spoon. It was one of the most amazing moments in my life and the tears came fast!
Over the rest of our stay, I was able to gradually sit in feeding sessions, and eventually start feeding him myself. They incorporated VitalStim therapy into his treatment plan (external electrical stimulation therapy for the treatment of dysphagia). Was it a 100% fix? No – we still have intense feeding therapy three times a week where Jackson receives VitalStim treatment.
He is still working on swallowing, and he will be for a while – but to keep it in perspective, I remind myself that he did not use those muscles for over 4 years, so it will just take time. What we gained was his understanding of the spoon, what “bite” means, how to deal with his refusals, etc. By the time we left treatment, Jackson was allowing me to place a spoon with puree in his mouth and he followed the protocol of closing his lips and attempting to swallow. Seems small, but for Jackson it was life changing. We now have the tools to move forward with treatment instead of spinning in circles!
While our journey at OCH was one of the hardest things we have been through as a family, I cannot say enough wonderful things about OCH, the staff, doctors, etc. There is so much to share about his experience there – it is hard to put it in writing without creating a novel! We feel so fortunate to have access to such great doctors, nurses, therapists (at home and OCH). We are so fortunate to have family and friends who help us through this journey. Most importantly, we feel fortunate to have such amazing and wonderful children that never cease to amaze us!
Joanna Ricketts has been a stay-at-home mom since 2007. She and her husband Adam live in Oklahoma with their 3 children: Bryant and Zachary (7 year old twins) and Jackson (4½ years old). Presently, Joanna and her husband serve on the board for the Down Syndrome Association of Tulsa (DSAT) as secretary and vice president.
At a recent speaking engagement for a local Mothers of Preschoolers (MOPS) group, Joanna described Jackson as “so much more than a little boy with Down syndrome. He is a son, brother, grandchild, nephew, student, friend, neighbor, and much, much more. He is Jackson – perfect in every way – and more alike than different.”