Caring for a Child with Kabuki Syndrome

Amy Long Carrera, MS, RD, CNSC, CWCMS
Registered Dietitian Nutritionist
02/16/16  12:10 PM PST
Kabuki Syndrome

Caring for a child with special needs is hard enough when they’re your own. Darla C. of California was called on to provide foster care to a child with a rare disorder. She took on the challenge and is reaping the sweet reward of watching a small child learn to thrive and love.

Read Darla’s Story:

It was early in the morning when I got a phone call from my social worker, Beth. Beth asked if I would take a two year-old boy with special needs into my foster home. “What special needs?” I asked.

Kabuki Syndrome

Beth explained that Joseph had Kabuki Syndrome, a rare genetic disorder that can cause mental retardation, hearing loss, weak muscles, heart problems, small stature, skeletal abnormalities, distinct facial features, severe language delays and feeding problems.

Because of Joseph’s feeding problems, he would need to be fed via a G-tube every three hours. He would require ongoing physical, occupational therapy and speech therapy and frequent doctor visits. Joseph also had asthma and lung disease, requiring the use of an inhaler and nebulizer.

Reality Check

Wow! Am I the right person to take care of a little boy with all of these special needs? I felt very inadequate to do so; I had never even tube fed a child before! Beth told me that Joseph was at Children’s Hospital and the doctor would teach me how to feed him. Even though I did not feel qualified to care for Joseph, I felt 100% in my heart that it was the right thing to do, so I agreed to take him home.

Meet Joseph

When I walked into the hospital room, I saw this precious, tiny little boy sitting in a crib. I stretched my arms toward him and said, “Hi Joseph.” He just sat there with a blank look on his face. He did not reach for me nor did he resist when I picked him up.  I learned how to give Joseph a bolus tube feeding and how to set up and operate his night time feeding pump. We were ready to go home!

The first few days at home were a bit overwhelming: watching the clock so I wouldn’t be late for a feeding, administering medications and the inhaler, attending doctor appointments and in-home therapies. Joseph still could not say a word, could barely walk, and most of the time did not respond to even his name being called. The days, weeks and months quickly went by and Joseph’s care became routine. I worked closely with his doctors, therapists and teachers. Gradually, I saw this little boy who I was told would never talk, walk or eat anything by mouth, begin to blossom!

Happy Ending

I fell in love with Joseph and two years later I was able to adopt him. Today Joseph is almost five years old. He has exceeded all expectations. Not only can he walk, he can run, climb up a ladder to go down a slide and jump on a bed.

Joseph can talk. Most people may not understand him, but his family can. He can express his wants and needs. Joseph can eat some foods by mouth. He remains dependent on the G-tube but he can at least taste some foods. Most of all, he is happy and full of love. Joseph touches the heart of each person who crosses his path. No more blank expressions, he always has a smile on his face. He is the happiest little guy.

My greatest reward as a caregiver is seeing my son accomplish something new almost every day. Whether it is a new word, or learning to put on his sock, each accomplishment is a milestone.  Best of all, Joseph shows me that he loves me by giving me lots of hugs and kisses.

Yes, Joseph’s needs are special but not more special than he is.

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