This post has elements that are hard to write and talk about, but I believe that these issues need to be discussed. We, as a society, are not talking about these things openly and honestly, and when we do talk about them, we do so in such a way as to not “offend” anyone. Lord knows, virtually everyone in this country is offended by something daily, whether it’s the Confederate flag, Bill Cosby, the Duggars, or Cecil the Lion. So today, I’m writing from my heart, knowing that someone out there will intentionally get their panties in a wad, and intentionally take something out of context that I have said. I’m hoping, though, to start a conversation about topics that matter.
My team and I, being Pediatric therapists, get asked a lot if there are more children today with handicaps and issues than there were in previous times. I have to assume that people ask the question, because it seems to them that there are more. Why else would one ask?
My answer to this question is multi-faceted. On the one hand, I believe that as a society we are much more AWARE of people with issues than we ever were previously. We are also more aware of how many devastating weather related events there are, and we are much more aware of shootings and extraordinary violence than we were before. Why? Social media and television. If you think back to the 1980’s, your news came to you via local newspaper, and the six o’clock or eleven o’clock news on ABC, CBS or NBC. National news. The local paper told you in general what was going on in your town, and had a page about regional stuff and a page about national stuff. The TV news (which lasted thirty minutes) told you all of the big stuff – huge accidents, devastating floods, commercial airline crashes….while still fitting in sports, weather, politics and nods to famous people who had died. In short, you got 30 second sound bites about things that you might care about. However, today, with CNN and Fox News running 24/7, with the banner snaking across the bottom telling you everything that is going on everywhere, we are probably more “informed” than past generations. As an example, thirty years ago you wouldn’t have known that an employee of Forever Florida lost a chunk of leg to an alligator. Today, you probably do.
In the 1980’s, if you ran into a child in a wheelchair and asked what was “wrong” with him, and the parent said, “He has Mitochondrial Syndrome,” you would have said to yourself, “I don’t know what that is, never heard of it.” If you had wanted to find out more about it, you would have had to drive yourself to the local library, hoped that somebody knew how to spell it, and hoped that the library had something that referenced it. Today, you can just google it – instant access to anything in seconds.
Social media – the Facebooks and Twitters of this world – have also made it possible for people to share their stories. My Facebook feed, through my “friends,” shows me daily updates of kids who are receiving cancer treatments, kids trying to recover from a massive head injury, the daily struggles of a child with Cerebral Palsy. We get to see and learn about people with special needs much more than ever before.
In addition to the “increased presence” of people with special needs in our lives through television and social media, there truly is an “increased presence” of those with special needs in our society. Prior to the 1960’s, babies born with severe handicaps and Down Syndrome were frequently institutionalized. As hard as it is for our younger generation to accept, in reality, if you had a baby with Down Syndrome in the 1950’s, a doctor would come in, explain the diagnosis, and talk to you about placement. It was the norm. Over the past thirty years or so, our society has changed dramatically, thanks to improvements in the medical, therapeutic and educational systems, among other things. We now know that a child with severe Cerebral Palsy is not necessarily also intellectually impaired. We now know that intensive therapy from birth on can change a child’s abilities. We now know that a child with a lower IQ can still learn – but maybe not at the same speed/in the same way/to the same capacity. We have also decided, as a society, that people with varying ability levels are still people, with rights and potential. For those reasons, most “state institutions” have now closed or only take the most severely impaired people who require twenty-four hour medical care. Our “handicapped” now stay with their families, or live in group homes where they go out into the community. Our federal government made laws that said that ALL children between seven and eighteen are required to go to school, regardless of impairment. It was also decided that whenever possible, children with special needs are to be included in the normal classroom. Therefore, your children or grandchildren now go to school with children who previously would have been “invisible” in a special needs classroom.
Beyond all of the above, literally all medical equipment has become portable – so a child who twenty years ago needed oxygen would have been homebound connected to a condenser can now be taken to the mall. Finally, just as our society’s viewpoint has changed (a lot) regarding pre-marital sex, marriage, homosexuality, women working outside the home, and inter-racial relationships, our acceptance of those “differently abled” has grown in leaps and bounds over the past thirty years.
True story from my life which demonstrates the changes – my Grandmothers’ cousin, Evelyn, was born in the 1920’s as a breech birth – butt first. She got stuck, spent too much time in the birth canal, and went without oxygen (apparently) for too long. The result was severe Cerebral Palsy. To say that she was handicapped to the point of deformity would not be too harsh. Her CP severely affected her ability to speak clearly. Evelyn was kept at home by her parents, but was not sent to school. It was assumed early on that she was intellectually impaired, as well as crippled. When she turned eighteen, Evelyn decided (reportedly on her own) that she would like to live at Polk Center (our local institution) among people of “her own kind.” She lived there for fifty years or so. When the institutions began to close, Evelyn was placed in a group home. She got a “job” at our local training and development center, and made her own money. Evelyn was family, and beloved. She attended every family event, from showers to weddings, until she died. She was almost impossible to understand when she spoke, but she had the most beatific smile that you have ever seen. She never got to date, or get married, or have kids, or have a career, but she got tremendous joy out of her roommates, her job, her relationship with God, and her inclusion with the family. She couldn’t hold my babies, but the love that she had for them nearly made her burst.
When was the last time you heard of a “breech birth?” With today’s medicine, the ob/gyn would have known that she was positioned wrong, and either been able to turn her in utero (external version), or a C-section would have occurred. Evelyn, born today, might not have had CP at all. But, if she did, her family would have immediately been given information about a specialist in the closest big city, and would have been set up with Early Intervention services as soon as she got home. Evelyn would be able to receive speech, occupational, and physical therapy, plus teachers, in her home, for free, until she was three years old. At that point, her local school district and the Intermediate Unit would provide a preschool setting for her, again, complete with therapists. Her therapists would have a pretty good idea of her intellectual ability prior to starting Kindergarten, but if there was any question, she would be given an IQ test from the school psychologist. Every attempt would be made to educate her, and minimize whatever physical issues she had. Evelyn’s life, being born in the year 2015, would have been so incredibly different from the life she actually lived.
So yes, we see more kids and adults with special needs in our communities for all of the above reasons, but we also have more children being born with special needs than ever before. Why? Well, there are probably dozens of reasons, but today I’m going to focus on one – medical intervention.
In a nutshell, if you went into labor during the fifth or sixth month of your pregnancy during the 1960’s or 1970’s, your baby was stillborn. What changed? The introduction of Neonatal Intensive Care Units (NICU) and helicopter ambulances. You are welcome to do all of the research that I did for this article (some of the information is fascinating – like how incubators with tiny babies in them became a display at the World’s Fair), but here I’ll give you the bullet. Due to general advances in medical care around the 1960’s, it became apparent to some doctors that pre-term infants could potentially be kept alive via tiny ventilators and feeding tubes. In 1960, Yale-New Haven Hospital opened the first NICU. However, this NICU bears very little resemblance to todays’ facilities.
The NICU’s of today really began to appear in major metropolitan hospitals, and even some regional hospitals in the 1980’s. Between the 1960’s and the 1980’s, enough research had been done for these facilities to overcome many obstacles to the saving of a preemies life – chief among them, the ability to prevent staph infections from racing from patient to patient. In addition to the advent of regional NICU units, helicopter ambulances also came to prominence in the 1980’s. Yes, helicopters were used during war to transport the wounded (think M.A.S.H.), but actual flying ambulances complete with paramedics did not start until 1969, and were not available in most parts of the country until the 1980’s.
Bottom line – starting in the mid 1980’s, a woman going into pre-term labor could be transported by helicopter if needed to a facility several hours away that dealt with this medical event on a daily basis. Babies were saved.
Full term gestation for a baby is 40 weeks. Anything less than 35 weeks is considered premature or pre-term. Most babies born between 35 and 40 weeks will do well without intensive care, providing that they are not “sick.” Anything under 32 weeks is considered extremely pre-term. In the early days of NICU, the focus was on babies who were from 30-35 weeks gestation. Anything less than that was not considered viable, for the most part, and those moms weren’t sent. Today, NICU intervention can save the life of a fetus at 22 weeks, 15% of the time. At 24 weeks, 55% survival rate. At 25 weeks, 80%. These babies are termed “micro-preemies” and for those that don’t survive, in many cases it’s not the prematurity that they can’t survive, it’s the biological “defects” that they are born with that cannot be fixed – heart, brain, and lung imperfections.
So, how does this change in medicine, this advent of NICU’s and Medivac’s lead to an increase in kids with special needs? Well, this is the hard part – the thing that is not being talked about and absolutely must become a topic of discussion in our society.
ALL of the research (which you should take the time to find), from Denmark, Sweden, the United States – ALL of it, indicates that 65-75% of infants who require NICU care have diagnosable disabilities. One of the latest studies that I found looked at 241 infants born between 22-25 weeks who had survived. 41% had SEVERE or MODERATE Disabilities, while 34% were mildly disabled. Only 20% were deemed of normal ability level without requiring special help. The other 5%? They had issues such as behavioral, emotional or autistic behaviors that could not be officially linked to the prematurity. We need to take the time to consider that in the worlds of therapy and education, a severe disability means that this child will never function independently, and that those with moderate disabilities may be able to function at some level, but almost certainly with caregiver assistance.
According to the American Medical Association (AMA) Journal of Ethics from October 2008 (where I got a lot of this information), the United States spent 24 BILLION dollars on NICU treatment of preemies, in 2008. Approximately 4 million babies are born in the U.S. each year, and at this time, 15% are born premature, which equals 500,000 babies in NICU. Of those, depending on how premature they are, and what medical issues they have, at least 65% of them will have a diagnosable disability that will require addition help from therapists or special education. A little bit of math will show that we are sending 325,000 little souls out into this world, every year, with some type of disability.
The preemies are not the only reason for the increase in special needs. The same applies to babies born at full gestation, but who are born with Hydrocephalus (water on the brain), heart defects, missing parts of the brain, and syndromes. Again, these babies would not have lived more than a day or two after birth, prior to the 1980’s. Now, we life flight them to the nearest big city NICU, they are put on a ventilator, given a feeding tube, stabilized with medications, and a few weeks or months down the road, are sent home with equipment and at home nurses. This also includes children who would have died previously from head injuries and drowning. We can keep them alive now.
What we can’t do is “fix” them. What most people simply don’t realize is that while we are now able to “save” babies at younger and younger gestations that many of those babies will have life-long challenges. People seem to think that once that child’s life is saved, that the emergency is over. They seem to think that these children will somehow get healthy, and “outgrow” their issues. You don’t outgrow brain damage. You don’t outgrow blindness. You don’t outgrow a lower than normal IQ. What we can do after the fact is provide therapy and education to the best of our ability to maximize strengths and minimize weaknesses. Medical research gets all of the money. The fields of therapy and education don’t. Yes, the children live at home now and yes they get to go to school, and yes, there are more local services available. However, they will still be impaired after 15 years of therapy. And, whether you can understand it or not, that breaks my heart, and makes me a little weepy, because therapists and teachers across the country give it their all, day in and day out, to make things a little better for these kids.
I know that people are going to comment, “Well, my kid was born at 3 pounds and now has a Master’s degree and makes $125,000.00 a year, so not ALL preemies have major problems.” I know that. Go back and read the statistics. There are always amazing stories of true medical miracles. But, I want people to realize that those wonderful outcomes are only happening for one in four or one in five babies born significantly premature. Many of the others are in and out of the hospital, having surgeries, having near death experiences, for the rest of their lives.
Just this week, it was all over the news that a “Micro preemie beat the odds.” Little Trevor was born at 22 weeks, weighing 1.6 pounds. He spent 345 days in the hospital, in NICU. He has had heart surgery, and eye surgery. He got to go home this week. Complete with oxygen, heart monitors, oxygen monitors, and a feeding tube. He will be receiving occupational and physical therapy to start with. The internet was passing this story around with lots of “likes” and comments about the marvel of modern medicine. What nobody stated was that 345 days in the NICU at $4000 a day is 1.38 million dollars. And he is a year old. And he doesn’t talk, or walk, and in fact, after all of this intensive intervention in the hospital, he can’t eat orally. He is on monitors, because he is not “out of the woods yet.” Should we be high fiving ourselves for this? I honestly don’t know – I have mixed feelings. He is adorable. His parents love him. He stands a chance of making great strides in therapy. We may see him again in ten years featured on the news – building robotics in his gifted class, followed by scenes of him playing ice hockey on his team. Or, like 50% or more of his “peers” (of which there are very few today) he may be severely handicapped. And, since Trevor lived at 22 weeks, there will be pressure on NICU units to continue saving those who arrive at 22 weeks. And, next year or the year after, it will be 21 weeks. Where does it stop? Do we want it to stop?
I don’t have the answers. What I do know is that medical insurance rates have more than doubled over the last ten years at my company, and part of the reason is because of our society’s decision to use “extreme measures” in medical situations. I also know that many school systems in the United States are struggling, especially financially, and I know that part of the reason is the drastic increase over the past 25 years in the amount of special education services required.
But, I also know this….when my youngest, Eli, was eight weeks old, he developed an RSV infection. He was life-flighted from our local hospital to Children’s Hospital in Pittsburgh, and spent five days in a medically induced coma while on a ventilator. I knew that he might have been brain damaged due to lack of oxygen, and I did not care. He was only 8 weeks old, and even then, so new, I could not imagine our lives without him. I could barely remember when we didn’t have him. When they put him on that helicopter, it never crossed my mind to ask how much that was going to cost, and nowhere, nowhere in my mind did it occur to me to “just let him go” and not send him. Not once in those five days in ICU did I ever have a thought about how much this was going to cost, how I was going to pay for it, and what it would mean to our family if Eli was disabled. Not once.
I’m suggesting that we need to talk more openly about “extreme measures,” and quality of life, and how all of this gets paid for, and who can be expected to take care of these additional 300,000 people forty years from now when their parents no longer can. I have concerns that in our effort to be humanitarians and recognize that all life is precious, that we may have inadvertently stepped over the boundary and are now playing God medically in ways that he never intended. If I haven’t explained it well enough, I have mixed feelings. I love our little people with special needs. The little guy that needs some help to talk clearly and build a vocabulary. The little girl with Down Syndrome who is so achingly sweet and wants to hug everybody, who will most likely be able to read at a third or fourth grade level, and will make friends, and will have a quality of life that may be different from yours or mine, but still happy and fulfilling. I love them. They are such a joy! But, I hurt for the ones who are ten years old with profound Cerebral Palsy and a testable IQ of 40, who have never spoken a word, and have not even rolled over on their own. The child who not only can’t scratch an itch, but can’t tell someone that he’s itchy. The child who cries and cries and can’t seem to be comforted, who, despite having the functional ability of a newborn infant, is forced by law to be taken to school in an ambulance with a nurse so that a Speech Therapist can try for the 7000th time to get him to say a meaningful word. Those kids, and their parents….they weigh on my heart. And for once in my blogging career, I don’t have answers. But, I do know that we all need to be willing to have open and honest discussions about these situations because there are many children who will need to be taken care of and what happens when the parents cannot provide care? What happens when there are reductions in state and federal dollars that provide services?