BLOOM media roundup

If you haven't seen the first video in our A Family Like Mine series, covering diverse families raising kids with disabilities, check it out. Rob and Dave, above, are a married couple who adopted Owen, who has autism. They talk about their adoption journey and how Owen has settled into their family and thrived.

And in other news:

'I didn't feel strong enough' The Telegraph
Brilliant animated account of a dad whose daughter is born with medical problems and diagnosed with cerebral palsy.

When it comes to disability, is it better to look 'different' or 'normal?'
BBC Ouch podcast
Adults with disabilities talk about pressure to improve their appearance. Should a woman with a prosthetic eye wear dark glasses? Should a woman who is a double amputee wear skirts? "It's the people staring that really gets on my nerves," one says.

Guinea pigs are autistic child's best friend The New York Times
When playing with guinea pigs at school, children with autism spectrum disorders are more eager to attend, display more interactive social behavior and become less anxious, according to a series of studies.

Anesthesiologist trashes sedated patient—and it ends up costing her
Washington Post Listen to the degrading comments two doctors and a medical assistant make about a patient who's receiving a colonoscopy. The conversation was recorded on the patient's phone. Shocking and makes you wonder.

For disabled people like me, cuts spell the end of independent living The Guardian
Penny Popper, a British writer and performer, writes about the end of England's Independent Living Fund, which covers the cost of attendants.

Comedian with a stutter gets the golden buzzer from Howie Daily Best Like
A baseball injury damages a young man's vocal chords, causing him to stutter. He performs as a comedian on America's Got Talent.

Esme can read The New York Times
The mother of a child who can't speak, point or sign writes about realizing her daughter can read.

Texas to require cameras in special-ed classrooms Disability Scoop
"We heard testimony from students with special needs and parents whose lives have been forever changed by mistreatment in the classroom," state Sen. Eddie Lucio, Jr., who authored the legislation, said.

Is special education racist? The New York Times
"Black children face double jeopardy when it comes to succeeding in school," write two researchers. "They are far more likely to be exposed to the gestational, environmental and economic risk facts that often result in disabilities. Yet black children are less likely to be told they have disabilities, and to be treated for them, than otherwise similar white children," according to a new study.

When doctors become patients A Better NHS blog
Amazing accounts of doctors who become patients and how it transforms their practice.

New theory suggests disability played critical role in our evolution Daily Mail
British anthropologists argue that disability is what made us human, promoting our social, empathetic and flexible natures.

TDSB school asked my autistic student not to attend graduation Heart Learning Centre blog An after-school program writes about a kindergarten child with autism being asked to come in later one morning so that she misses graduation ceremonies.

Holly, Alex and Jaxson 1,000 Families Project
A gay couple begin the adoption process with one request: They want a child with Down syndrome.

Doctors go online for medical information, too Wall Street Journal
When a child has a rare condition, doctors look to online groups for families who can shed light on their experience. Our BLOOM contributor Barb Farlow is referenced in this article, as is a paper she and two doctors published in Pediatrics on the experience of parents of 272 children with Trisomy 13 and 18.

Horrified family finds daughter's photo on prenatal screening ad CTV
Without the Canadian family's consent, a photo of a girl with Down syndrome that had been posted on her mother's blog was used in a building-size banner advertising a Swiss prenatal test to detect Down syndrome.

Why isn't it the right time for NEO Kids? Northern Life
An eye-opening editorial about the obstacles a proposal for a pediatric hospital in Greater Sudbury is facing, despite widespread parent and medical support. Includes disturbing statistics about the health of children in Northern Ontario vs the Ontario average.




 
 

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How to keep climbing with a medically complex child

By Jade Biesinger

My name is Jade and I live in England at the other side of the “pond” with my husband and four lovely children. Heni, one of our daughters, has Trisomy 18.

Heni can’t walk, talk or do everyday tasks and is classified as having profound and multiple learning disorders. She wasn’t expected to live beyond birth but here we are—almost 20 years later—still heading in to uncharted territory.

I've often described our experience raising her as feeling like we are climbing up a mountain. We started out with lots of energy and supplies, only to find that they have been used up along the way—having covered many different terrains. As time has progressed the ascent seems to have steepened and we've got progressively more tired and feel in need of more rest stops.

During this time I feel I've given up lots of “me”—looking after Heni and subjugating my own needs to the bottom of the pile. I’ve encountered “ill” health, “un” sanity (I won’t say insanity because that’s something different) and at times have been bereft of creativity or balance in my life. Perhaps you could describe it as survival mode?

I was stuck. Stuck in the house, stuck in the role of carer, stuck in the mindset of “will life ever be any different?” I was living what sometimes seemed like a monochrome life—one I had never expected to be living for so long, but all the time keeping my head down and continuing to climb.

As I’ve journeyed on experiencing the valleys and peaks, I’ve not only been searching for ways to help my daughter and family and add colour to life’s struggles, I’ve also been looking to improve my own health and wellbeing.

When Heni was younger she used to have the energy to do full days at school but progressively over time I’ve seen her energy wane and her capacity reduce (strangely on par with my own?).

Nowadays she only has the energy to go to college for three-and-a-half hours in the mornings and then comes home to rest, sleeping for about one-and-a-half hours.

My time to accomplish anything has therefore dwindled from a whole day to a few hours.

Making time count is important to me, and I put my health as a high priority. Some of the things I do during that time frame are to go for a walk or run or do some form of exercise (according to how and what I feel I am capable of). I try not to overextend or overdo anything, but to be consistent in my actions. An important learning point for me was:

I can only give out so much before I become depleted. So I have to consistently fill myself before I can give to others.

I liken it to a watering can with a bunch of holes. It’s never going to be full up because it’s continually leaking out. You have to patch the holes up and replenish it before it can give water out of the spout and shower the flowers! I can’t always control every type of energy expenditure (like when my husband works away a lot or when Heni takes a dive for the worse) but I can control the other holes that leak energy.

For me, those include food intolerances, not eating right, sleep problems, negative thinking and too much or the wrong type of exercise.

It wasn’t until about eight years ago that I suddenly realized that I was “toast” and needed to have a break—on my own! My husband virtually forced me to go. I cried all the way to the airport and most of the journey to my destination, by which time I wondered how on earth I had got in to this state.

I had always been an independent person who would do anything and loved exploring and adventure. But I’d become a shadow of my former self. I needed some ME time. Which is the second thing I had to learn:

I’m always too hard on myself and feel guilty for everything and anything. Therefore it’s important to learn to quit the guilt.

How could I leave my daughter? I asked myself. How could my other children cope? What if anything happened to my daughter while I was away and the worst happened: she died? Would I ever forgive myself for leaving?

The week I had away was a wonderful pause in space and time. It made me realize that I needed to be strong, I needed to recharge so I could go back and have something to give back out again. I needed to stop the guilt and realize I wasn’t super human and could only cope with so much. I needed to look after myself too.

It sounds kind of selfish when you read it in the cold light of day—but what is the alternative?

There is a quote that says: “To lift someone else you have to be on higher ground.” How does losing your physical or mental health put you on higher ground?

I returned back from the holiday in a better space, but guess what?

It wasn’t long before that watering can was emptying again…and quicker! For a number of years I did a solo holiday or went away with a girlfriend. I always had fun, enjoyed the change in scenery and always came back feeling recharged and ready to go again. But, it’s surprising how soon you forget, so my lesson 3 was:

Remember the things you’ve already learned! Get up, dust off, try again.

I would forget to take a break and replenish my energies and land back in the same place as I’d previously been!

Even now I’m still resistant to the fact that I need help and I need rest from time to time. I still feel guilty and find it hard to just do nothing!

So what is the consequence of consistently neglecting yourself and not listening to your needs? Probably one of the most frequent occurrences resulting from “dis” ease today is that of chronic stress, which is the precursor to most illness out there.

Which leads me on to lesson four:

I’m in charge of my own health.

Now that doesn’t mean I don’t go to see any one to advise on health matters…on the contrary. I think it’s important to get the best advice possible and that often involves a number of different opinions.

For me that involved getting a series of lab tests done to show me what was happening in my body. I learned I was quite severely depleted in practically everything! All of a sudden I understood why I felt so rubbish! What I had failed to realize was that the constant stress I had been under was using up all my nutrients and leading me to a point where it was a struggle to do anything.

On to lesson five?

By small and simple habits are great things brought to pass!

Everyday consistency of small actions for me means taking supplements, small changes in eating or exercise habits and getting to bed a few minutes earlier. It takes time to get in to a hole and it takes time to get back out again. Often the temptation is to do something a few times and say “well that didn’t work” and move on to something else, without really giving it a chance. Sometimes it takes years for health to return fully. So, I am expectantly hopeful. Which leads me to lesson number six, my most recent:

Be patient, hold on to hope and enjoy the journey.

I read an article recently that described a demonstration. A person held two soda cans, one empty and one full. The empty can was squeezed and began to bend and then collapse under the pressure. The full can withstood far greater pressure and held firm. The demonstration was likened to us needing to be filled with spiritual strength (whatever that looks like for you as an individual). When spiritually fed and “full” we are able to withstand far greater outside pressures and forces. It doesn’t matter how many respite breaks I take or vitamin supplements I pop if I don’t have this type of strength. Without it I would have been crushed a long time ago.

There’s a scripture on a quilt that hangs above my bed, which reads: “I’ll wait on the Lord, be of good courage and he shall strengthen my heart.” I love reading those words and realizing that there is someone who understands the big picture, someone who I can “hope in and hope on,” someone who is teaching me, step by step, to be a better person and who is beside me (and you) every step of the way.

I gain strength in the knowledge that I’m not on this journey alone and that there’s someone higher and far greater than little old me who doesn’t have all the answers.

There are also people like you who are trekking up your own personal mountains, on similar journeys, but experiencing different valleys and peaks. We have to remember that as we climb we are doing so without a map. We don’t know where the peaks and valleys are and sometimes we can’t even see the top of the mountain. My wish is for us all to keep “on the way” and learn to love the terrain. And I hope that when we look back on the view we will see that our journeys were varied, rugged but stunningly beautiful.

Being a carer to my daughter has been one of the most difficult journeys I have ever had to take. It’s still a learning process and there are still peaks to tackle, but little by little I am learning to stop, enjoy the vistas and savour the time I have left with her. My plans for the future, and advice to you? Keep going!

You can follow Jade on her blog Henibean. She describes it as “learning how to live amidst challenges and maintain health, sanity, creativity and balance.” She uses her experiences as mum to Heni and her background as a physical therapist and naturopathic iridologist. “Please drop by and join me.”

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Raising a child who wasn't supposed to survive

I met Esmirna Lopez-Cugurs (above) and daughter Amanda at the Montreal Children's Hospital. Here Esmirna talks about Amanda, 4, who has Trisomy 18 and wasn't expected to survive. I think Amanda found the topic rather boring and was encouraging us to include her! The Lopez-Cugurs family attended an ethics workshop about how cultural devaluing of children with disabilities can play out in their care. Amanda's dad Eric spoke about his family's experiences on a parent panel. Thank you Esmirna and Amanda!

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Disability and quality of life

I contacted Dr. Larry Fenton, a pediatric palliative care doctor in South Dakota who had an invited comment published in the American Journal of Medical Genetics this month. He said he would "be honoured" to see it reprinted here.

We have talked before about quality-of-life measures that are based on how "most people" would rate life with a severe disability with life without: Is life with disability half as good as life without?

"How easy it is to assume we know what a good quality of life is for anyone other than ourselves," Dr. Fenton writes. See below. Louise

Trisomy 13 and 18 and quality of life: Treading ‘‘softly’’

Lawrence J. Fenton
Pediatric Palliative Care Sanford Children’s Hospital, Sanford School of Medicine, University of South Dakota, Sioux Falls, South Dakota
July 2011

Not too long ago I was privileged to speak at an annual international conference of the Support Organization For Trisomy 18, 13 and Related Disorders (SOFT). I learned much more than I taught. There were over 200 families there. Approximately half of the families were bereaved parents of a child with Trisomy 13 or 18. But then there was the other half, the half with surviving children with a trisomy. The oldest child I met was a young lady with trisomy 18 who was celebrating her 30th birthday. She was beautiful. Well dressed and impeccably groomed. She was non-ambulatory, nonverbal, and had a gastrostomy. But she surely knew her parents, she smiled at them and touched them with affection. There were many others with a wide distribution of ages. I met 16-year-old Karah and her siblings 11-year-old Olivia and 9-year-old Spencer. Karah’s smile as she hugs her siblings is contagious. Olivia had written a wonderful tribute to Karah in which she wished that others could see Karah’s heart in the same way she did. She loved her deeply and wanted others to do the same. I met a family with an adorable 3-year-old with trisomy 13. She was walking and squealing and smiling and relating to her parents. Must be a mosaic I thought but then her physician mom told me that chromosomes were done at Boston Children’s and she was a full trisomy. I saw a room full of families with children with trisomies and yes, they had profound disabilities. But the room was filled with smiles and laughter and all of the sounds of people enjoying one another. A room full of longterm survivors. After nearly 40 years as a neonatologist and now several years as a pediatric palliative care physician, I considered long-term trisomy survivors a statistical rarity. Forget the statistics and the rarity. This was a room full of families having fun with their children. Each one was different, each with a distinct personality, each with the dignity of full personhood. I do not want to minimize the struggles these families go through. One mom said that most were just inches away from losing it completely on many days and that sometimes it was just hard to get out of bed to face changing a diaper on her 20-year-old. But, these parents would not have it any other way.

I learned very quickly that the three words these families never wanted to hear from physicians and others who provide care were ‘‘Quality of Life.’’ I was somewhat taken aback because as a palliative care physician I frequently use these words to describe what we do in terms of helping families cope, helping children deal with pain and other symptoms so that life may be as good as it can be up to and including the time of dying. Good palliative care is much more about living than dying. Apparently for these families, the phrase ‘‘quality of life’’ had been used by the medical establishment in judgmental ways perhaps in times of giving advice with regard to treatment or just general commentary. A remark soon after birth that sounds like, ‘‘I’m afraid your child won’t have a very good quality of life’’ may seem innocent but it is not. How easy it is to assume we know what a good quality of life is for anyone other than ourselves. We assess the burdens of care, the impact on siblings, the impact on parental relationships, the impact on finances and the utilization of resources. We perform ethical analyses assuming we truly understand how to apply beneficence or maleficence to a child with trisomy 18 or 13 or any other disorder in which there may be profound disability. As if the child can tell us what he or she is feeling. But we can do our best to assess and treat pain and discomfort. Smiles and laughter need no score pad. We know what they mean. The advice we give may often be centered around our personal notions about quality of life. As a profession we are far from all being on the same page with such advice as was recently well described by Janvier et al. [2011] in an ethical case discussion about a child with trisomy 18. They point out the absence of data on outcome of procedures done on children with trisomy 18.

I write this not to advocate for any particular point of view except to advocate for a willingness to do whatever it takes, however long it takes, however many consults and team members it takes to fully inform and understand the goals, values and aspirations parents may have for their children. Once we have done that we need to honor the parents by helping them achieve those goals whether it is comfort care alone, a full court press or something in between. Regardless of the choices of the family, they deserve our respect, our affirmation, our support, and part of our own humanity as we try to do our part to make their lives and the lives of their children as good as can be. Is not the privilege of doing that exactly why we are here?

REFERENCE
Janvier A, Okah F, Farlow B, Lantos JD. 2011. An Infant with Trisomy 18 and a Ventricular Septal Defect. Pediatrics 127:1–6.

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Pediatrics article: How to get a copy

The editor of the Pediatrics article has told Barb that anyone can e-mail her to ask for a copy, and she can send them a PDF. So ... if you would like to read this journal article about the ethics of heart surgery in infants with Trisomy 18, please e-mail Barb at:

anniefarlow@gmail.com

Thanks! Louise

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Should babies with Trisomy 18 be treated?

Many of you remember our interview with Barb Farlow, who lost her baby daughter Annie (above), who had Trisomy 13, after she was rushed to hospital in respiratory distress. Barb later read Annie's medical records and learned a "not for intubation" order had been written without consent.

This month Barb co-authors a fascinating article in Pediatrics -- the official journal of the American Academy of Pediatrics -- that address the ethics of offering heart surgery to the parents of a baby with Trisomy 18. Most children born with the condition die in the first year of life.

In An Infant with Trisomy 18 and a Ventricular Septal Defect, Barb and two North American neonatologists respond to questions about whether heart surgery should be offered and, after a surgery results in complications and the child can't be extubated, whether life support should be withdrawn over the objections of his parents.

The article concludes with these comments from Editor Dr. John Lantos:

Cases of trisomy 13 or 18 highlight an area of deep disagreement. Most parents would not want an infant with these conditions. Many of them are grateful for the prenatal diagnosis that allows them to terminate an affected pregnancy. Others choose a different course and either forego prenatal diagnosis, or, as in this case, use the information to make decisions about obstectric and neonatal care. Doctors are similarly deeply divided; some feels that aggressive treatment is futile and should not be offered, and others defer to parents. Drs. Okah and Janvier reflect this professional disagreement. Ms. Farlow speaks for the parents who come down on the side of treatment. These cases raise the most fundamental questions about the value of life, the meaning of personhood, and the limits of parental and professional authority. Deference to parents is generally the right course unless the infant is clearly suffering from ongoing treatment that is unlikely to be of benefit. The doctors in this case did the right thing: they worked to find common ground. As often happens, the infant surprised everybody.

Read the article and tell us what you think. Louise

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