Roger is our StarPALS patient who suffers from Hydranencephaly, a congenital condition in which the front hemispheres or cerebrum of a baby’s brain are missing. In its place, the fluid that typically cushions the brain, fills the space. Children with this diagnosis often suffer seizures and uncontrolled movements, they have a lack of growth, have breathing and digestion problems, have difficulty regulating body temperature, have vision problems and suffer intellectual disability. The outlook for children with hydranencephaly is generally poor and many with this disorder, pass on before age one. However, in rare cases like Roger’s, children may survive for several years or more. Roger is 11 years old.
When we arrived at Roger’s home, he was asleep in a sitting position, albeit fitfully, on the family sofa. His parents were nowhere to be seen, but after a few minutes, Papa and Mama appeared smartly dressed. We asked if they were planning to go out. “No, no!” Papa replied, “when the HCA team comes, we must be properly dressed to welcome you, our guests”. I was touched by this gesture.
That day, our nurse was planning to show Papa how to use the shower chair that we had sent over. Their old shower chair was not functioning well and Roger was getting a tad too big for the chair. Papa had previously told us that it was a struggle to bathe Roger on the old chair. Roger would sometimes stiffen his limbs when handled and if not put on a proper chair, his safety may be compromised.
With the new chair, Papa said that he had tried to use it, but failed to do so, as the chair was not high enough, for the seat to be rolled over the toilet bowl. We adjusted the chair’s height together and inclined it to a 45-degree angle. Papa then tried wheeling the chair into the toilet cum bathroom and it fitted perfectly to go through the narrow door frame and over the toilet seat, to rest nicely just under the shower rose. Papa was all smiles. After wheeling it back out to the living room, Papa then carried Roger onto the chair and we put on the safety harness. Roger was roused from his fitful sleep and was tense at first, but soon settled into the new chair. One might imagine that a shower chair is made of hard plastic to ensure that it is waterproof. This chair was, however, made of quick-drying, netted mesh, allowing the water and wind to pass through. Roger seemed relaxed and soon fell fast asleep in his shower chair! Papa and Mama were elated that Roger could now be showered easily and safely. No more tension and struggles for Papa and of course, Roger.
Papa and Mama chuckled to themselves when they saw how soundly Roger was sleeping – “Maybe we should let him sleep in it from now on, as he seems to be so comfortable and snug”.
It was only a shower chair and the family were ever so grateful. I guess that as ordinary people with ordinary families, we forget that providing a simple shower chair can mean so much to a family with a sick child. Let’s appreciate the health bestowed on us and not take our good health for granted.
Have a Healthy, Peaceful and Happy Lunar New Year everyone!
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