Age: 2 years, 8 months
Cognitive Age: 1.5 years
Therapies: Physical, Occupational, Speech, Nutritional and SST (Specialized Skills Training)
Siblings: Alan (6)
Parents: Candace Buchanan and Matthew Canatella
Kabuki Symptoms: Coarctation of the aorta, feeding difficulty (tube fed), hypoglycemia, GERD, focal seizures, slow weight gain, hearing impairment, hip dislocations, high arched palate, long eyelashes, global developmental delay, non-verbal
Kenny's Story: Candace's pregnancy with Kenny was extremely dramatic as it was her 10th pregnancy. Having had 8 miscarriages previously, Candace had no hope or plans of having any more kids. Candace discovered she was pregnant at just 4 weeks due to Hyperemesis Gravidarum, which she had in all her pregnancies. Because she also battled chronic sickness due to severe endometriosis, her OBGYN declared her a high-risk pregnancy right away. They did not tell anyone Candace was pregnant until she was almost 15 weeks along, just in case something happened. Getting checkups more often than normal and being in and out of the hospital to get IV fluids, it was very surprising nothing was found. Candace and Matthew had no idea about Kenny’s soon to be whirlwind of a life, nor how much theirs would change so drastically.
At 41 weeks, when Candace was set to be induced the very next week, there started to be some sudden pain. Candace had never experienced a natural labor, she was always induced. Thinking this was just her being sick again, she laid down to sleep. Soon after, the contractions where screaming and Candace knew something was not right. They were off to the hospital 30 miles away! An awfully slow worried dad driver, they were pulled over. At that exact time the officer came to the window, Candace had a strong contraction and they were let go right away. Once arriving at the hospital, the contractions slowed down quite a bit. The nurses kept moving the monitors, unable to detect Kenny’s oxygen level very much. Hours later, they decided to go ahead and induce her. Kenny came into the world within hours! When the doctor held him, everyone could see how blue he was, but he was crying like a “normal” baby. It would be 12 more days in the NICU before they found out what was really going on, well the beginning of it that is.
At 12 days old, after miles of tests and doctors that their little town could get, they found Kenny's coarctation of the aorta. Kenny was then transferred to Texas Children’s, in Houston, Texas. Kenny would spend the next five months fighting tooth and nail for his life, with a very puzzled team that did not give up. After the coarctation repair, Kenny did not want to wake up from sedation and he could not breathe on his own very well. After multiple times of unsuccessful extubation attempts, then having to reintubate him, his lung collapsed. Once reintubated, they let Candace and Matthew know they could only try one more time because his throat was becoming too injured. A week later. their final attempt was unsuccessful. This caused a trachea reconstruction surgery, which left him with a only partially functional vocal cords. Soon after that surgery, Kenny’s battle with addiction to the pain and sedation medications he had been on for three months would come to light. Once he was extubated for the last time, bringing him out of sedation to have a more normal experience and be able to leave to hospital would take almost three more months. It wasn't long after that Kenny's seizure began. He continues to take medication today to keep them under control. Once his G-tube was placed and he became more comfortable, he inched closer to his normal until he was finally able to go home.
Candace worked in the commercial real estate business, and Matthew works for Blue Bell Creameries. Candace's job allowed her to work from the hospital, which she did that for most of the week and hospital stay. As she was battling her own health issues, she could not sleep when she was there. This caused her to get extremely sick often, so, thankfully, every few days grandparents were able to stay at the hospital to help. After Kenny came home, Candace realized she could not work like she had before, she had to make a sacrifice she never expected and dedicated as much time as she could to help Kenny. Many of our Kabuki families are single-income households for this very reason.
Currently, Kenny is 2 years 8 months old. He just started walking 6 months ago, but his balance has improved from when he started, although he has a lot of accidents. He receives many different therapies, most important right now are his twice a week OT in-home appointments. Twice a month he has speech, nutrition, and SST (Specialized Skills Training). He also has daily work he does with his in-home nursing and Candace. He is almost school-age and the talks with the parents, nurses and therapist if he should go to school are starting.
Kenny’s Favorites: “Patty cake back and forth with mommy and daddy, any Gospel music, ‘A Thousand Years” by Christina Perri (from the twilight movie that mommy watched quite a bit when pregnant!"
Kenny’s Relationship With His Brother: “Kenny’s older brother loves him, it still hard for Kenny to understand affection (something we are working on) due to him being sedated for almost the first 5 months of life. Alan is only in mommy’s house every other week due to split custody candace has with Alan’s dad. But they get to spend a lot of time together and Alan even helps with feeding Kenny though his G-Tube and therapy times!"
Advice for Kabuki families: “Be scared, google, google, and when you do not find anything join us in the Facebook group and see what we have found!
We are all in the dark, but the dark here is bright after your eyes adjust."
Advice for parents of “typical” children: “Quit asking us what the future will hold, we are just as questionable."
How Kenny has impacted the family: “Being a KK parent has changed my life completely, which I am sure is what we all say. Life in this community is so scary at first, I remember getting the phone call April 3rd, 2019. Waiting for that call for weeks and weeks, when GENETICS TCH popped up on my phone, my heart stopped. It really did not start beating again for days. Knowing nothing about Kabuki makes it this SCARY word, but them not knowing anything either was not only surprising, but horrific at the time. I remember on the phone call, they told me to find the Facebook group and that would be the best way to find things out. I laughed out of shock! Well, that started it. I did not even use the group at first very much. Now I am on there more than anything else! His doctors at this point just ask what the group said to do, and we try the methods from them! Kenny’s syndrome forced me to open my eyes and stand up for myself and my kids. Which made me ask all the questions, all the time about everything in life. It also forced me to realize a lot of things in my life were not great either, which then caused me to change my life completely, and Kenny’s. This past year I have lost almost 100lbs. I went to working part time (which I have not done since I started working at 16), and Kenny has moved from not being able to walk or voice himself to now not only being able to walk and create grunts into things we can understand, but to be able to play and do therapy successfully. Also, it made me realize I needed to work harder on my relationship with my ex-husband and his new wife, our relationship was strained to say the least. Now we are at a point we have a group text and talk every day to help each other be the best parents we can! Which has helped our/my 5-year-old from being behaviorally challenged to talking about his feelings and doing yoga at 3am instead of fighting with me (still working on a sleep schedule). We all learned this past COVID year about ourselves, but I never would have progressed this much mentally and physically if it were not for Kenny bringing so many things to light!"
Written by Candace Buchanan