dear future mom…

…of a baby with Down syndrome.  This beautiful video speaks for itself.  I wish that all health professionals who disclose a diagnosis of Down syndrome would watch this.  What they say is true.

the price of care

“Eleven years ago, one cardiology exam with associated tests cost $800, now the same exam costs $2,800. In 2003, our son’s first two open-heart surgeries cost $250,000. In 2006 his fourth and fifth open-heart surgeries cost more than $800,000. In 2005, one heart catheterization cost $27,000. In 2008 he had two, priced at $78,000 and $86,000.” – from Amanda Rose Adams’ The Price of a Child I Wouldn’t Let Go.

The Canadian health system is not perfect.  We don’t have enough family physicians to go around.  There are ridiculous wait times for specialists’ appointments and for crucial diagnostic tests.  Our mental health system is fractured and struggling.  Families with children with disabilities pay out-of-pocket for their children’s rehabilitation services – Speech, OT, PT, family support, behaviour coaching.  We pay directly for dental and eye care and pharmaceuticals.  BUT.

If my child requires inpatient hospitalization, the cost to me is $0.  Technically, I pay for inpatient health services through my taxes.  But I do not write cheques for hospital care, or pray that my employer’s insurance coverage is adequate to cover the costs of a sick child.

As a Canadian, these thoughts do not even cross my mind.  When Tommy Douglas fathered universal health coverage in 1962, Canadians were safe from bankrupcy due to hospitalization forever more.  I will fight tooth and nail (and by my the ‘x’ on my ballot) to ensure that the Canada Health Act remains intact, and is not tinkered with by greedy provincial governments.

Amanda Rose Adam’s essay in Motherlode reminded me to be thankful for what we have in Canada.  It also sparked an internal outrage on behalf of our neighbours to the south who encounter catastrophic financial ruin because of sick kids, accidents or chronic health conditions.

Michael Moore made the film ‘SiCKO’ seven years ago.  I was reminded how his message remains true today.  As Amanda points out, health care prices have gone UP substantially since this movie was made.

“The measure of a society is how they treat their most vulnerable citizens.”  America, surely you can do better?

congratulations – your baby has Down syndrome!

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The other day, I was happily reading Curtis Sittenfeld’s new novel Sisterland, when on Page 74, there it was.  “It looks like the baby has Down’s (sic). ” Spoiler alert:  this doesn’t end well for the baby.  I’ve since shoved the book in a drawer, and it is now forever unread. (Note: It pained me to do this.  I think Curtis Sittenfeld is a super author, and I’ve previously gobbled up all her books).

In the Memory Keeper’s Daughter by Kim Edwards, the book opens tragically, not because the newborn baby has Down syndrome, but because her physician father abandons her.  The tragedy is in the abandonment, not the diagnosis.  The book unfolds with a more positive narrative than Sisterland – the baby grows up happy and loved by her adoptive family, while the biological family ends up broken by the secrets in their family.

Canada’s July 2013 issue of Chatelaine magazine features a story about terminating a pregnancy because of Down syndrome, with the odd subtitle:  Ending my pregnancy, and saying goodbye to the son I was already in love with, is the hardest thing I’ve ever done. (Again a painful note:  I’ve written for Chatelaine before.  This one hurt too).

Medical News Today trumpets:  “Improved Pregnancy Test Exposes Birth Defect Much Earlier,” referring to Down syndrome as a “fetal abnormality.”   In countless media stories,  mothers are warned of the “risks” associated with having an advanced maternal age, which inevitably points to Down syndrome.

And on and on it goes – in books, in newspapers, and in real life.

I’m tired of this continuous shovelling of negative – and therefore biased – information about having a baby with Down syndrome (or any child with a disability, come to think of it).  Where’s the other side to that story?

My son Aaron is now ten years old, and yes, he happens to have Down syndrome.   I’ll not fool you – sometimes life is hard. The trajectory of our entire lives has changed.  But that’s not all bad.  The hard parts have to do with systems and society – not Aaron himself.

Since Aaron was born, I’ve loved deeper than I ever thought possible.  I’ve had my eyes opened to people who are different.  I’ve tackled things I never thought I could do – like sit across from a Principal to advocate for my son be educated, and have cameras in my home to speak to the media about injustice and discrimination, and fly thousands of miles away to speak at conferences.  Aaron has come with many gifts. He’s taught me to slow down.  Life is for living.  To only do one thing at a time and to try your very best.  And celebrate.  Celebrate everything.

I bristle at the memory when he was presented to me by our family physician as “bad news.”  The disclosure of a Down syndrome diagnosis, either prenatally or after a baby is born, is merely news.  Assigning the word “bad” to the diagnosis also automatically assigns a value-laden attitude, which is transferred onto prospective or new parents.  And that’s ethically not fair.

My dream is one day news about Down syndrome is presented in the media, in novels, and by health professionals in the way news about twins is shared.   As with any unexpected diagnosis, there is time for adjustment to accept the baby I have, instead the baby I thought I had.  But there’s no need to engage in fear mongering about Down syndrome.

Down syndrome has been around for a very long time – perhaps from the beginning of time.  Images of people with this chromosomal difference have been identified from the 15th century.  Since I’ve been Aaron’s mom, I’ve thought a lot about the meaning of disability.  I believe that people with disabilities are a part of the human fabric, just like all other people with differences.   In fact, many of us will experience disability ourselves in our lifetime.  And the phrase, “we are all one car accident away from a disability,” reminds us we are all vulnerable to unexpected news in our lives.

I had the experience of visiting a family who had just adopted a baby girl with Down syndrome. The baby’s name was Emily.  Emily’s mom was beaming when she answered the door.  She and her husband were thrilled to have their long-awaited daughter in their arms.  We talked about resources and services, but mostly we just basked in the joy of that new little girl.  Emily was very much wanted and loved.

Contrast that with the way most biological families receive a diagnosis of Down syndrome.  If it is a prenatal diagnosis, physicians can set up automatic appointments for termination, and use terminology like “burden” and “suffering.”  After birth, families are often shunted away to rooms at the end of maternity wards.  Hospital photographers never show up to take baby photos.  Nurses avoid the room and social workers peek in the window.  Nobody brings flowers or balloons.  Hardly a celebratory welcome to the world for that beautiful new baby.  The birth of every single baby deserves to be celebrated, and what health professionals forget is that most of us parents love our children no matter what.

Enough with this doom and gloom.  Authors, journalists, editors and health professionals:  just because you see having a baby with a disability as a tragic event, don’t transfer your subjective values onto your readers and families.  Saying “Congratulations” instead of “I’m sorry” would go a long way to contributing to progressive change in this world.  I might have stars in my eyes, but I hope for a world where we all belong, disability or no disability.  It is within our own individual power to make this happen.

time well spent

I’ve been speaking as a patient mentor to classes of health faculty students for the past year.  Every few months, I commit to a half day of speaking to rotating groups of young folks who are embarking on careers in health – in medicine, pharmacy, nursing, rehabilitation medicine, dentistry, and nutrition.  These are different audiences than my typical conference attendees, who are seasoned health professionals.  Some students are very young – just out of high school – and they remind me of my own older children – tentatively stepping their way in a confusing and competitive world.

I share our family story of sudden immersion into the world of disability after the birth of our youngest son.  I recognize that I have an agenda when I present.  There is one key message that I hold dear.  I speak because I hope that maybe one student will remember my words when they are standing in front of a vulnerable patient.  I hope they think to themselves that they remember what that mom said way back when they were in school, and remember she said:

Patients are people first.  My son is has Down syndrome, yes.  But he is always a little boy first.  That’s how I see him, and if you see him as merely a bundle of deficits, we are going to have a very tough time communicating and forming trust that is the basis of a relationship.  Please talk to Aaron directly, and not through me.  He knows how old he is and what grade he is in.  And if you have a hard time understanding him, I will jump in and interpret for you.  Using his proper name, and not calling him ‘Buddy’ or another nickname is a demonstration of respect.  And he’s never ever a ‘Downs boy’ (sic).  He’s a boy with Down syndrome, with the same hopes and dreams as any other ten year old boy.  He loves Minecraft, has a soft spot for hip-hop music, and has a deep interest in cars.  I share these messages gently, through story-telling, and use humour to soften my words.

What I love about the students is that once you break the ice with them, they are fearless in their questions.  They ask me about my marriage, Aaron’s siblings, his school experience, his recreational activities.  They don’t think of health as being contained in a hospital because they have not yet been silo’ed into the ‘sickness’ based health world.

I think that the whole landscape of the patient experience in health care would totally shift if professionals would adopt a person-first philosophy.  And what better place to explain this than to students just starting off in their practice, where they are open to ideas, and they are formulating their own philosophies.   They have vast capacity for compassion and kindness.  I believe there is great hope with these future health professionals, and they are very worthy of our attention and our time.

You cannot teach a man anything, you can only help him find it within himself.  ―Galileo Galilei

a rare bird – family-friendly work environments

I was pregnant with all three of my children when I was working full-time for a health organization.  My first pregnancy was in 1993, and I had an awesome director who was ahead of her time in the days of six months maternity leave.  She accepted (even celebrated) the fact I was pregnant – I remember her visiting my bedside at home when I broke my leg while seven months pregnant, she accommodated my massive belly and crutches when I returned to work, and happily attended my baby shower after my son was born.  

The next two experiences, working on different projects in health, were not as great.  When I was five months pregnant with my second child, I asked for time off for a short vacation.  I was told, “I’d get plenty of time off when the baby was born.”  Then, just 11 years ago, with my third child, a work environment became so hostile when I announced my pregnancy that I quit two months later, and did not ever consider coming back.  I became another employee lost to the world of freelancing.

This odd attitude towards pregnant women in the workplace extends out to mothers and fathers.  Ishani Ganguli eloquently expresses the challenges of being a new mom in medicine in her Healthy Debate essay.

Family friendly is not just for people with children.  We all come with some sort of family, kids or not – and workplace flexibility needs to occur for all sorts of caregiving – partners, parents, siblings, friends.  Monique Lanoix writes a piece in Impact Ethics entitled, Family Caregivers in Canada:  Prognosis Poor, which challenges the notions that family caregivers are invisible, and unpaid.

Family friendly policy is not enough – it must be demonstrated in the way we treat people.  Do I eye roll and heavy sigh when moms cancel meetings because they have a sick kid to care for?  I dearly hope not.  Do I always have back-up plans to cover for each other if a colleague becomes unavailable, for any reason at all?  Yes I do.  Do you have to book off because of surgery?  Gosh, I should be understanding of that, and I will check up on how you are doing, too.

I want to work with people, not robots.  Workplaces need to recognize that life is complex.  Stuff happens.  Women get pregnant.  People go for surgery.  Beloved pets die.  My specialist’s office isn’t open in the evenings.  Parents go for chemo.  Kids get sick.  Most of all, health organizations should have healthy work environments.  How can we care for others if we aren’t being cared for ourselves?