Tell us your child’s story.
We found out about Calvin’s heart condition, Tetralogy of Fallot with pulmonary atresia and MAPCAs, at our 20-week ultrasound. We started our pregnancy with a midwife, then we transferred to a high-risk OB. Once his heart condition was diagnosed, we had biweekly appointments that soon turned into weekly appointments to track his development. We were prepared for Calvin to undergo open heart surgery immediately after birth. He was transferred to the NICU at Kosair where he was able to wait a little over a month to have his first surgery. He responded well to the medications and recovered fairly quickly. During his first inpatient stay, from birth to early April, he was diagnosed with 22q Deletion Syndrome. Upon further research it was determined that his genetic condition was the cause of his heart defect.
22q Deletion syndrome is vast and varied between each patient. There are over 180 different possible side effects to arise with 22q Deletion Syndrome. For Calvin the most prominent issue was his cardiovascular system. His eating difficulties can also be rooted in 22q, as well as his small stature and compromised immune system. Given Calvin’s lengthy NICU, PICU and CVICU stays and his compromised immune system he has been in isolation most of his life, also causing a delay in his vaccinations. His body simply hasn’t been ready to undergo a lot of standard and common things that most take for granted. 22q can present itself in a duplication or a deletion. It is the most common genetic disorder next to Down Syndrome, but it is grossly underfunded and under researched. Typically, when we would see new doctors, we would be the expert on his condition because most of his specialist had never even heard of the genetic condition.
After Calvin’s first surgery he was able to come home with a medication routine, a pulse oximeter and emergency oxygen. He was followed closely by several teams of doctors in Louisville who decided that he would need to undergo another heart surgery. He spent his first summer at home with in home therapy sessions with PT, OT, and Speech. In August Calvin would have his second open heart surgery where the surgeon would attempt to do a complete repair of his heart and correct the MAPCAs with the Unifocalization. This recovery was hard on Calvin. He had rhinovirus, a cold, which put him back on the ventilator. It would take several attempts of extubating before Calvin was able to breathe independently. This resulted in a very strong oral aversion.
Once Calvin was home again, he was unable to eat. He lost weight quickly no matter what type of food or formula blend he was offered. After two weeks at home he was readmitted because of failure to thrive. His body was working overtime to keep his heart healthy and he needed to have a G tube placed. We were back home again within a couple of weeks. His weight soon stabilized but he still had trouble with taking any foods by mouth. We tried every bottle and sippy cup they make, and nothing seemed to keep him from aspirating.
After recovering from those two procedures we started noticing that Calvin would fatigue quickly, and his breathing seemed labored. Calvin’s case was soon referred to Dr. Frank Hanley, the surgeon who pioneered the Unifocalization. Dr. Hanley is a surgeon at Stanford Pediatric, Lucille Packard Children’s Hospital.
A wonderful family we met while Calvin was recovering from his second heart surgery also has a son with 22q and we were lucky enough to be their CVICU neighbor. They began seeing the 22q clinic at Cincinnati Children’s and recommended them to us. We sought out a second opinion from Cincinnati Children’s 22q Clinic and the Cardiology department about a possible surgery in California. Soon we were able to see doctors in every specialty (currently seen by; Cardiology, Pulmonary, Genetics, Endocrinology, Audiology, Immunology, Nephrology, and the feeding clinic) that Calvin required who had a background in 22q. Once Calvin was being treated as a whole the improvements in his quality of life started to come. Instead of treating the symptoms they all began treating his condition.
Cardiology teams from Cincinnati, Louisville, and Stanford all agreed that Calvin needed his surgery performed by Dr. Hanley. After a year’s worth of battles with insurance, exhausted denial appeals, and three surgery dates, we finally made our way to California in May of 2018.
The surgery was expected to take anywhere from 18 – 24 hours. It was another bumpy recovery with an extended CVICU stay, dialysis, and extensive inpatient therapy. Before we were able to be discharged, we had to have Calvin enlisted in outpatient therapies at home. His Pediatrician went above and beyond, as she tends to do, and found APT for us while we were still inpatient at Lucille Packard Children’s. She went to the facility and checked with all the therapist he would need to see to make sure he had immediate openings with them.
After the standard eight-week precaution period was up Calvin was able to start seeing PT, OT and Speech weekly. Since healing from his Unifocalization and starting at APT Calvin has started walking and eating selective food, though most of his diet is still provided via G- tube feeds. He is learning sign language and has just recently been placed with a communication device with help from his current speech therapist and the Perlman Center at Cincinnati Children’s. He is now running and playing like any typical toddler. Something we were never promised, something we are abundantly grateful for. Calvin will have a follow up Heart Cath in California this May. We don’t know what the future holds for Calvin, we will never know when the ‘last’ surgery will be or if there ever will be a final surgery. We are hopeful that the corrections made will last and that future procedures are as simple as a visit to the cath lab.
Why did you choose APT for therapy services?
The therapist were highly recommended by our pediatrician.
What improvements have you seen in Calvin since he started therapy at APT?
Vast and plentiful improvements in all areas. He can walk, he is eating selective foods, and his fine motor skills have improved. He was able to be placed with a communication device thanks to a recommendation from our speech therapist who worked with the Perlman Center at Cincinnati. Now Calvin is starting to communicate more effectively.
What has been your brightest moment along the journey?
Seeing Calvin take his first steps, watching him want to eat and hearing him ask to play Legos.
What advice would you give other parents who face similar situations?
Never stop fighting for what you know your child deserves. Do your own independent research on your child’s condition and seek out those specialists.
Occupational Therapist, Tannis Mosher, Speech Therapist, Catherine Starr and Physical Therapist, Lindsey Fields have worked with Calvin since July of 2018 and are so encouraged by his progress.
What improvements have you seen since working with Calvin?
Tannis: Calvin was not walking when we began therapy in July. He is now walking and is able to tolerate 2 hours and 45 minutes of therapy! He is also now trying more foods and is beginning to communicate with his new device as well as completing 12-piece puzzles and sitting for fine motor tasks.
Catherine: Calvin’s case was very different and interesting from the beginning. It is the only time I have been interviewed by the pediatrician prior to seeing the patient, which I was very impressed by. One of the things Dr Thomas was most concerned about was that we would be able to address Calvin’s oral defensiveness and help him return to oral feeding. This is something I have addressed with other children and I was able to assure her we could handle this. Calvin’s mom has been fabulous about incorporating strategies into their daily activities and as a result Calvin is able to orally eat regular foods and to drink thickened liquids. He has begun to use some actual words and vocalizes to indicate his agreement or disagreement. In addition, Calvin has been provided a communication device which he is able to use for routine communication and we continue to work on improving oral speech skills.
Lindsey: Calvin has been such a joy to watch grow and learn and in just a few months he has made huge improvements in strength and gross motor skills. Calvin and his Mom make a perfect therapy team, making our jobs seem easy. They both continue to amaze us with their bright smiles, positive attitude, and motivation to participate in therapy. When I first met Calvin, it was a few months after his last heart surgery and Calvin had gone back to crawling instead of walking for mobility. That didn’t hold Calvin back from exploring everything and greeting everyone in the room and I knew right away he was going to take off in PT too. Calvin is now walking, or running, climbing steps, and climbing over anything in his path. He refuses to let anything slow him down and practically runs through the door into the therapy room. Sometimes, he even tells his Mom he wants to go to therapy on his own and asks her to wait for him in the waiting room.
Describe a little about your and Calvin’s relationship.
Tannis: Calvin has a wonderful supportive family who is highly engaged in therapy. He is a real personality and a joy to work with.
Catherine: Calvin has a warm and funny personality. He greets me each session with “hi” and a hug and says “bye” when he goes to see the next therapist. In between he tries to limit his vocalization to “uh huh.” When he goes to his next therapist, I hear some of the words I tried to get him to say in our session. One time I mentioned this to his Mom, Calvin heard and laughed. I’m convinced he understood what I said. The other therapists have said the same thing. He does more OT stuff in Speech and more PT stuff in OT. It’s ok though because we work together and can share strategies. Calvin is an amazing little man!
Lindsey: Calvin’s smile is contagious, and he always brightens my day. I am certain that I am the lucky one in our relationship and I get much more from him than he gets from me. Calvin has taught me how to be positive, motivated, confident, outgoing, and resilient no matter what the day has in store. He has taught me how to take on each day with a smile and not to let anything stand in my way.