“We were told from birth that Andrew would never walk,” Andrew’s father Jeremy Haydon said. “Never stand on his own. Never do anything. Years and years of tortuous physical therapy, muscle training, strength training, he walked and that was a beautiful moment for us and we thought there is hope for him.”
The lowest point happened years later when a Louisville doctor stepped out in the hall and made a call to an out-of-state facility.
I spent more than a dozen years working in the foster care system. One reason for the burnout was the sheer number of parents that had to turn over care, surrender their parental rights, to the County/State to get care for their special needs child. This was in Pennsylvania where access was much easier than Kentucky.
ReplyDeleteYou may hate me for saying this, although the medical profession has come so far in being able to save medically fragile children, they have ignored all the unbelievably complicated and expensive treatments that will be required for the rest of that person's life.
I have seen medical teams yell whoop we saved him, and then walk away. First do no harm?
Would letting them die be "doing no harm" then? And saving their lives is "doing harm"?
Delete...okay...
Practitioner here. One large question that I see unanswered & not considered by these parents is: Who will care for these individuals, that have absolutely no capability of caring or making decisions for themselves, when the parents or "support team" cannot? Not financially, but physically due to age. Potential by and large for great harm in large numbers occurring everywhere.
DeleteI understand the comment that Anne in Texas made, and in some ways, for some people, it might be a blessing in disguise. But she also has to consider the husband and wife that have tried for a very long time to have a baby, perhaps without medical intervention, such as invitro or artificial insemination, or even fertility drugs, but just using the old fashioned method, so there is no place to lay any blame other than God's will, if you are a believer, or bad luck or karma, if you are not.
ReplyDeleteSo when the woman finally gets pregnant, or perhaps carries the baby to term, after several miscarriages, imagine the doctor then telling the couple that their baby is not normal, during her first few months, and the agony of them not knowing if they should take the unwanted advice of so many who would tell them to abort the baby that they had tried so long to conceive. Their chance at having a child, no matter how many problems he or she may bring. I mean, every child brings their own set of problems. I have a 25 year old daughter who will never live on her own, that my wife and I adopted, together with her 3 year older sister, and who did not show any signs of problems when we got her at age 3. She is able to care for herself, but has social problems, as well as physical health problems. Would I go back 20 some years and change anything? Of course not. And this set of parents would likely not want to change their minds and never have conceived this son.
We have become so accustomed to having our children born with such good health, and our doctors doing such a good job of post natal care, that we seldom see any of the issues in our country that are common in some 3rd world countries.
It is sad that Kentucky doesn't have anyone with the ability to step up and change things, so that the state can do what is needed, without the family having to give up their rights. One can only hope that with enough light shined upon things, it will also bring heat, which is something that politicians do not light. No matter if they have a D or an R behind their name, no politician likes to be seen as unsympathetic to children's plights.
In Michigan, we have what is called a Children's Ombudsman Office, which is mostly used to report when the CPS has either bungled their jobs, or the foster care/adoption system or Juvenile Justice system have screwed up, and they will do an investigation. It is unclear from the way that I read it, but it seems like they only have investigative powers, which are then reported to either the state government for changes, or to law enforcement as well, for more immediate action.
We also have the same system in place for vulnerable adults, either at home or in assisted living/nursing homes. I know that it isn't much, but it would at least be something. I know that if I were a parent in Kentucky of a child that had such special needs that required that much care, and I had the option of either letting my child become a ward of the state and them getting the needed care or keeping my child, and perhaps them not getting the care that they were entitled to, it would be a near impossible decision. A lawsuit against the state would certainly be a consideration, for them not providing my child with the care that is required.
Of course, a no win situation for the parents, and sadly, for the state as well. That is, until they change both their rules and the ability to meet the needs of children like Andrew. Perhaps working with other states, to combine services, or other outside the box thinking.
There's a special hell for those directing this country's for profit medical cartels.
ReplyDeleteOhio Guy
it's my child, l will care for it, then, after 20-30 years the parent/carer dies and the special needs child, who has only ever known care from a parent, is dumped in "the system", kind of like dumping a dog at the pound...
ReplyDeleteAh, yes. I believe the apostle Paul's advice there was "care for widows and orphans...but not the ones with expensive or complex medical issues. In fact, kill those ones in the womb, so they don't detract from my Social Security check." -Saint Paul of AARP
DeleteOh...wait. No, that's not it. Huh. It's a puzzler. Can anyone remember? Are we supposed to care for cripples and the helpless, or murder them? My bible is unclear. /S
In Saint Paul's time, there were very few expensive medical issues because doctors had few treatments to offer. And if you did require an expensive treatment, you only got it if you came from a rich family - but it usually was not a problem because FOR MOST SERIOUS DISEASES, THE PATIENTS DIED BEFORE THEY COULD RUN UP A BIG BILL. Nor did the government pay for treatment and care - not even for veterans that lost limbs or their eyesight in the service of the state.
DeleteSo when you're talking about keeping sick babies alive (but not healthy) with million-dollar treatments, and then someone taking care of them for the rest of their lives, it's not something Paul COULD have advocated, because it was hardly ever possible.