History 101

There are many disabled children in the world and I am willing to bet that most of them have parents as proud as I am. The world tends to give our kids short shrift so we have to brag a little louder and point out different kinds of achievements. My pride in Maggie’s achievements is enormous. I want to give you a little taste of what’s she has been through to get where she is today.

You know that Maggie uses a wheelchair and a communication device and has nurses caring for her round the clock – or her mother when nurses are not available. She is totally dependent on others for her physical needs. She is smart, funny, and loves to be the center of attention. Some of you know, but most of you do not know about Maggie’s impressive medical history. You have probably figured out that she has cerebral palsy because that is the most obvious of her conditions. However, it is only one of many.

Maggie was born with something called vater or now called vacterl association. That is an acronym for the constellation of physical anomalies that appear together at birth. The problems include: vertebrae, anus, cardiac, trachea, esophagus, renal or radial and larynx. It doesn’t fit her perfectly, she doesn’t’ have the “c” or the “r”, but she had additional anomalies not addressed by that acronym. Everything right down the middle of her body didn’t form properly when she was developing as a fetus. From what I have learned, this happens randomly. Sometime early in pregnancy, like 6 or 8 weeks, development goes awry. Everything developing at that point is affected. Because it is so early in development, the results are pretty dramatic.

And, before you ask... yes. We had every test known to man. And no. We did not know anything before she was born and I have always been glad about that. The anticipation of Maggie’s arrival was a very happy time. We knew we were having a girl and we were excited because Maggie has two older brothers.
Maggie was a beautiful baby and it was hard to believe her insides could be so screwed up looking at her perfect face. Because of these significant physical problems, Maggie has had many surgeries to correct or compensate for the physical anomalies. The first was when she was less than 24 hours old. She had six or seven surgeries – and I mean major major surgeries - before we took her home from the hospital 12 weeks after she was born.

At six months of age, she developed hydrocephalus, a buildup of fluid in the brain, another condition requiring surgical intervention. Many surgical interventions. In fact, we have truly lost count. We stopped counting at 70. That’s right 70. At least 50 of those have been to repair or replace the shunt in her brain and the other 20 to address those physical anomalies that could be fixed. That’s over 70 times I’ve watched her get wheeled into an operating room and over 70 times that I’ve wondered if she would come back. She not only comes back, but she generally “comes to” in the recovery room with a wan smile.

In addition to the surgeries, there have been dozens of hospitalizations to deal with one issue or another. Maggie has lots of tubes in her body. She has a tube (shunt) in her brain to get the fluid out, a tracheostomy tube in her neck so she can breathe, a feeding tube in her stomach so she can eat and is dependent on catheter tubes to empty her bladder. Tubes clog and cause problems of their own. There have been literally thousands appointments with dozens of doctors, nurses, therapists and all the other professionals that goes along with living in the medical world.

Maggie greets each one with a smile and wows them all.

So that is why I brag. Maggie is a stud.