Saturday, August 11, 2007

The Great Gift of a Child

Back a few years when I was medical writing, I got a call from a woman who was very excited about a new public outreach program and she wanted me to write about it. And it was pretty wonderful. So, as it turned out, was she.

Back then, Fort Worth had a State School for the Mentally Retarded, which has since been closed. But it was open then and started a community outreach program where therapists would come to the home to work with the families each week.

This family was in great need. Their third child was born with only a little more than one-third of her brain. She was so profoundly retarded she had no ability to suckle her milk. She had to be taught, and she did learn, and survive. She was also hydrocephalic. Her head was easily twice normal size, with a shunt leading down the side of the head to the neck to drain off some of the excess water. For all this, she was a pretty baby, with a healthy, well-nourished body and a pretty face even through all the swelling.

The team came weekly to work the baby through a full array of motions and exercises designed to stimulate and strenghen, and they taught the mother how to do it the rest of the time. She was so excited. She was learning so much about child development that she never knew before. She loved helping her baby work to strengthen and grow.

When I saw her, the baby was about nine months old. She couldn't hold her head upright yet, but her mother said determinedly that she would. She could lft her heavy head off the mat for several seconds now when lying on her tummy. She worked every single day to strengthen her back and neck muscles. And she was responsive. She smiled when her mother picked her up. She wriggled happily when tickled. She seemed to notice the brightly colored toys around her and would reach out with a hand when her mother moved one closer.

"I don't know why she was born the way she was," her mother said, "but she's been such a gift. She has taught my whole family so much."

She said in the past, for Christmas she would have bought her two older girls dolls, perhaps, and some plastic toys, but "not this year! I'm learning to think about what enriches them, too." They got the dolls. They also got some books and educational toys she thought would have a good effect on their growth. "I never used to buy books. Now I read to them every night." She said they all, her husband included, had learned more about patience and gentleness.

She and her husband had married almost right after high school. They lived in a comfortable older house in a shabby-genteel part of town. Their lives had been satisfying and quite ordinary up until this baby's arrival. It was no longer ordinary. But it still seemed long on the satisfying.

As I was leaving, she told me,"One day, she will sit up. She will learn to talk. You'll see."

About three years later, I was saddened to read the obituary of this special little girl.
The shunt had developed an infection, always a danger in such cases, especially back then, and she had died.

But my heart lifted at one of the final paragraphs. She had been attending half-day nursery care, where she had learned and could say the names of her classmates. She attended sitting up in a small motorized wheelchair. She could count to five. And she had lately started on her ABCs.
Sad her life ended so soon. But all told, in four short years, quite a success story.

And I'll bet her family still remembers her as a precious gift.


Babs RN said...

When I was in nursing school we spent a day in a facility, the kind of which I didn't know still existed. You see on all the movies and hear older mothers tell of their children being recommended to be "placed in an institution." This was one of those "institutions."

There were some incredible children and adults there who had been there pretty much since birth. The two I remember most vividly were a 27-year-old hydrocephalic with the mind of a two-year-old, who could only lie on a stretcher with his head turned to the side because front-to-back, his head was as wide as the stretcher - and an 18-year-old wheelchair-bound girl with the size and appearance of a toddler but with the mind of an 18-year-old.

I had asked how they got here and it broke my own 19-year-old heart to hear the answer: "Their parents either didn't want them or couldn't handle what was wrong with them." "Are any of the parents involved?" I asked her. "A few. Not many," came the answer. I could hear a faint tinge of disdain for those parents in the voice of the caregiver. And it wasn't hard to see why - these kids were nothing short of phenomenal and their parents missed out on something very special by dumping them off.

They had one big advantage in being there though: being surrounded by others who were "like them" and in the care of such wonderful people, they had the love and acceptance that their own parents couldn't or wouldn't give them. The initial scene would shock you, but the happiness and life of the place overrode that very quickly. It makes you appreciate your own health and life even more, and it lifts your heart to see them learning and playing happily among friends.

And the parents? It's their loss.

night lightning woman said...

Increasingly, I think, these places do not exist. Parents who can't provide 24-hour care? Get thee to a nursing home where the person will be warehoused without any additional aids. At least here in Texas. In the case I narrated, the parents were there. At that time, some structure was, too. It drives me a little nuts to know we did find some solutions, and did do some things, and because of money or politis or both,we stopped. Years ago. Why?

Babs RN said...

I can't find that that place exists anymore either. Looked around online for awhile. But a nursing home is definitely not the place for them and is definitely where a lot of them wind up if there are profound physical issues. I don't know why either. With MH/MR here in GA we have group homes, day treatment, and assisted living apartments (if they're grown and capable of managing that with help).

There are more support services available for the parents to maintain their kids in the homes, though. Babies Can't Wait up to age three, PSA for private-duty nursing of children requiring machines (vents, etc) to survive, so it's not hopeless. It just takes more of a village. I have a number of sick/disabled kids on my caseload and overall the parents do seem to try, at least.