Obama’s healthcare debate filled the radio airwaves the fall that Little Miss Adorable was born. I would drive to doctor’s appointments, hoping that Mr. Obama’s reforms would go through and amazed at history in the making. I could not fathom paying for every little part of the healthcare we receive – heck, we simply cannot afford it. This became especially apparent after the birth of Little Miss Adorable.
We are very fortunate to live in a large city in Canada – we have access to the best medical care in the province and the entire cost of Little Miss Adorable’s 3 week hospital stay plus repeated hospital, nurse, clinic, occupational therapist, etc, etc, appointments were covered by our provincial healthcare plan. Our genetic test alone would have cost around $50 000. I cannot calculate the costs of 24-hour nursing care, daily doctor visits and the rental of all the machines attached to Little Miss Adorable. I estimated Little Miss Adorable’s health care costs would have been close to 2 million before she left the hospital. After she left we had home visits by nurses and an occupational therapist as well as doctor’s appointments and a round of antibodies to prevent RSV infection (respiratory syncytial virus can cause serious complication in babies with low muscle tone) That round of antibodies alone would have cost $12 000. At this point in Little Miss Adorable’s life we would have paid around $15 000 in occupational therapy costs alone. But our provincial health care plan paid for it all.
I repeat: we are very fortunate. Little Miss Adorable’s early diagnosis opened doors for us. We received excellent medical care. We received excellent occupational therapy to help Little Miss Adorable develop her muscles. We did not pay for any of it. Of course, one could argue that we pay taxes and are entitled to all this care because we’ve been paying into the healthcare system for years. But really, we did not pay for it, our society did. Why?
Apparently there are no known cases of Prader-Willi Syndrome in Kenya – because the babies die in infancy. Failure to thrive. Limp, floppy babies with no suck reflex cannot survive without reasonable medical care. The babies dehydrate and starve to death. Prader-Willi Syndrome has two stages – in early infancy babies have such low muscle tone they cannot feed. This is failure to thrive. The second stage is ‘thriving too well’ – around ages 3 – 5 years children with Prader-Willi Syndrome lose the ability to feel satiated and begin to eat excessive amounts of food. Excessive eating coupled with a very slow metabolism results in obesity. There are countless other syndromes and medical conditions that start with the babies in a failure to thrive state. Down Syndrome. William Syndrome. Rett Syndrome. Fragile X Syndrome. You get the picture.
Some would make a cruel case for ‘natural selection’. I would like to make a case for ‘eternal optimism’. I am not skipping through fields of daisies wearing rose-coloured glasses. But, I would like to point out that as our treatment of people with disabilities has improved, so has their ability to contribute to greater society. I would be thrilled if Little Miss Adorable would become an assistant hairstylist or early childhood assistant. She will probably never be able to run the show, but she’d make great support staff.
Our understanding of ‘disability’ has changed alone with our treatment of people with a disability. In Ontario in the early 1900s children born with obvious signs of ‘impairment’ (i.e. the face of Down Syndrome) were placed in institutions staffed by medical ‘experts.’ Parents were advised by well-meaning doctors that ‘expert care’ was needed and the child would be a ‘burden’ on their families. This continued until some parents got pissed off – but it took them 60 years to do so. In the 1960s, following the Civil Rights Movement in the USA and the Americans with Disabilities Act, parents in Ontario started to take matters into their own hands. I am sure, all along parents were saying no thanks to the doctors who wanted to take their children, but the 1960s became an era of wide spread public change. Parents said, I’m gonna keep my child and raise them myself. And I’m gonna get together with some other parents with kids with special needs and we are going to build a school for OUR children. And we will hire a teacher ourselves. The first school for children with intellectual disabilities was in a rented out church basement in London, Ontario and the teacher paid a few dollars a month by the parents. Special Education was born.
Those institutions remained, people lived out their entire lives without family (‘crown wards’) and their day governed by staff. I actually met a woman from the institution in Orillia. She was a blond, blue eyed woman in her early 40s. I imagine her as little blond baby being carried into the echoing halls of that institution, and someone leaving her behind. She was ‘sent into the community’ when the Orillia instituion was closing. She told me about the little fenced in playground she played at as a child. She told me “I’m a crown ward.” I watched her struggle to choose a soft drink for her lunch. When she finally chose one she turned to me and asked, “Did I do alright?” For her entire life others had made choices for her, now ‘released’ she struggled with daily decisions. The last institution for people with intellectual disabilities in Ontario closed just months before Little Miss Adorable was born – March 31, 2009.
I spoke to a retired pediatric nurse in the early days of Little Miss Adorable’s severe hypotonia and overall failure to thrive. You couldn’t miss me – I was toting a floppy, rag doll infant with a plastic tube stuck on her face that ran into her nose. Anyone who saw us asked what was wrong. We said she had a problem with her muscles, that she couldn’t eat, and that she was getting stronger. We did not get into details about Prader-Willi Syndrome or genetic testing. Most folks talked about other babies they knew with tubes attached to them, how well they turned out, and wished us well. But this nurse said less and told me more about how far we have come as a society. After I told her the story of Little Miss Adorable’s hospital stay and how lucky we are, she said, yes you are.
Back then, when I was nursing, we would have put babies like that in a separate room. And said they were failure to thrive.