A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, February 16, 2017

My association wants to change

There are some proposed changes coming to my association. The Spina Bifida and Hydrocephalus Association of Ontario.

To focus on Hydrocephalus and take the opportunity that is there to really step up and fill the need for a national Hydrocephalus Association of Canada.

There was a phone conference last night that I participated in, to get more information. And this is what I learned. (I took notes). I am mixing up the order of some of the points, for what I hope is flow is clarity. (Only members were notified of the conference call, but there wasn't anything in the call that said that those who participated couldn't discuss what we learned). There is going to be a vote of members at the end of the month, and only members are allowed to vote.

I found this picture of change, and thought it would appropriate...

The proposed change is to expand into a national Canadian Hydrocephalus association (and have a corresponding name change).

There is an identified need in Canada for a National Hydrocephalus Association. And the SB&H are in a position to fill that need. SB&H stressed that the proposed change will not impact any services that individuals with spina bifida currently receive, and if anything it will provide the opportunity to increase services to members.

  • There is a national Spina Bifida and Hydrocephalus Association of Canada but I am not that familiar with it. Beyond finding it inferior to our Ontario Association. But I might have to look at it more in the future.
  • My understanding is that they concentrate more on the spina bifida and less on the hydrocephalus.
  • They are connected to individual provincial groups, but not with SB&H
  • So I am not sure (and of course SB&H can't say what another group would do) if they would be able to fill any hole left by our organization concentrating on hydrocephalus only.
They said that they have been approached by clinicians who state that there is a need for a national hydrocephalus association.

Another reason is financial. There is the need to look for alternative financial opportunities and look at sustainability solutions for the association to be able to continue to provide services to their members in the long term.

They discussed that there is a decrease in the incidence of spina bifida (a topic that inspired my previous blog post - Incidence of Spina Bifida and What's the Point). But the incidence of Hydrocephalus is increasing, including congenital hydrocephalus (born with), acquired hydrocephalus (caused by something, often as a child), and Normal Pressure Hydrocephalus (adult). So it would make sense to increase focus on the disease that is increasing.
  • They did not say that they would focus less on spina bifida, just more on hydrocephalus

During the phone conference they stressed that the proposed change is to increase services to members and expand the mandate of the organization.

They also said that nothing online (http://www.sbhao.on.ca/ or http://www.folicacid.ca/) would change.

So that is what I learned in the phone conference.

At the general meeting in September, which I try to go to every year, they mentioned this. At the time I didn't really realize that it would be changing my organization. I thought that it would be something separate while still maintaining the Spina Bifida and Hydrocephalus Association of Ontario, but helping to develop a separate Canadian Hydrocephalus Association.

But for my organization to take out the spina bifida part of their name (their identity?) I find it hurtful and frustrating. We identify the most with the spina bifida aspect, and less with the hydrocephalus aspect. Yes Nick has a shunt and hydrocephalus but it is the spina bifida part that affects our lives. (And maybe the hydrocephalus part too, but it is really all rolled into one).
For us, it isn't 2 different things it all means the same thing. Or else how many diagnosis can one diagnosis have (ie spina bifida which leads to hydrocephalus, also chiari malformation, neurogenic bladder, neurogenic bowel, non-verbal learning disability, ADHD ect).
No, we identify with spina bifida and the rest is just part of the package (but not necessarily everything)

And I know that in the planning stage you can say that you won't effect any spina bifida services. But when your name doesn't have spina bifida in it, then how soon before that starts to fade away...
How can you change your name and your mandate, but still provide services to a diagnosis that you no longer identify with.

A concern that I brought up, is for new parents and newly diagnosed. Where will they go to for information?
They won't go to the folic acid website. They are past that, this has already happened.
And they wouldn't go to a hydrocephalus only website or information, that is not a given yet, that is not the focus. You can only focus on one diagnosis at a time, and hydrocephalus isn't it
  • Or at least it wasn't for me, 80% hydrocephalus rate means 20% won't have hydrocephalus, and Nick's didn't develop until he was 3 weeks old)

As a member of the SB&H association, I have the right to vote on the proposed change. This is my  association and my vote will be counted.
At the moment I am not sure how I will vote.

From my letter I received, the proposed change is: SB&H is recommending changes to its by-laws to facilitate the transition to a new national organization with a focus on hydrocephalus.

There is a meeting and vote on Feb 26th, and the ability to assign a proxy to vote on your behalf.

But I still don't know.

I know change is sometimes necessary, sometimes positive, and no one proposes a change that is purposefully negative.
But for all of the promises and talk that this will be positive, will increase services and not effect the spina bifida families. I think that it will eventually. I think that it will create a slope that will gradually take away from spina bifida (not on purpose), but because the mandate is for hydrocephalus and that needs to be the focus.

So that is what I worry about. I worry that it will take away from (and if not take away, then focus less on) awareness of spina bifida and take away from support and information for new parents. And while there isn't a focus on impacting that termination rate (47%), there will never be.
And that hurts me. That number still haunts me and I feel it is 47% of parents who miss out on belly laughs and smiling faces and being told "I love you so much", all because of fear and negativity and the fact that no one has a crystal ball.
  • And I know that this is my bias.
  • And it isn't even a mandate of my current organization, but to me, allowing me to raise awareness and show what spina bifida looks like, I am making a step to inform the next 47%. So when a parent receives a diagnosis they can say "Oh, I know what that is, I can do this, just like Nickolas' parents" (I heard similar words when I told my then-manager, "Oh, just like Charmaine" an adult with spina bifida I have worked with, and have gotten to know.)
That is what I want from my organization. The platform to say "this is what spina bifida looks like" and I worry I will lose that with a Hydrocephalus-only focus.

 And in case you need a reminder.
This is what spina bifida (and hydrocephalus, and chiari malformation, and neurogenic bladder and bowel) looks like!

Incidence of Spina Bifida and Whats the Point?

There are some changes happening in my Spina Bifida and Hydrocephalus Association. To focus more on Hydrocephalus.
One of these reasons is because the incidence of spina bifida is decreasing.

This is going to be a writing post, but eventually I get to my point. But I want to work my way up to my point (and "show my work").

I know the incidence of spina bifida (and neurotube defects) is decreasing with the introduction of folic acid into food, as well as increased education regarding folic acid as a prenatal and woman's vitamin.
But then my brain started wondering...

Is the incidence really decreasing, or is the birth rate decreasing?

What is the difference? And why does it really matter?

You can find Canadian information online pretty easily.
In 2013 Canada released a document (available as a pdf) Congenital Anomalies in Canada.
It states at there is an average of birth with spina bifida of 2.6 per 10,000 births. (so this is the birth rate). But this excludes date from termination before 20 weeks.
NTD from the same data is 4.0 per 10,000 births.
So approx. 65% of the NTD births were spina bifida in this report.

It mentions another article with a higher rate, by DeWal et al in 2007 that looked at folic acid fortification. But this article looked at live birth, still births and terminations (so all diagnosed) and looked at neurotube defects as a whole. This rate was 0.8 per 1,000, which would be 8 per 10,000.
If 65% of NTD is spina bifida, then this rate would be 5.6 per 10,000 is diagnosis rate.

All of these studies say that yes the incidence of spina bifida is decreasing! (by 46%, which is fantastic)

So I looked at the numbers in the articles and crunched some numbers (because I like numbers, and why not do this on my day off).

To compare apples to apples (spina bifida to spina bifida) and look at diagnosis versus births:
2.6 per 10,000 babies are born with spina bifida. But 5.6 per 10,000 pregnancies are diagnosed with spina bifida. So 47% of pregnancies diagnosed with spina bifida are birthed after 20 weeks.

If you want the pre folic acid-fortification numbers. 5.5 per 10,000 babies born, and 9.75 pregnancies diagnosed. So 56% pregnancies diagnosed are born after 20 weeks.

This of course doesn't include babies that have spina bifida as part of a more complex health issues which cause death or miscarriage after diagnosis, or those where abortion is done after 20 weeks.
And who knows, maybe in the last 6 years (most of the data came from 2011 and before research that was done) things have changed.

But this is a blog post, and not a research article.

So all of this research and heart ache or trying to find a termination rate in Canada for spina bifida. Brought me a number. 47% of pregnancies with spina bifida end in a birth after 20 weeks.

For everyone not a labour and delivery nurse, they may wonder why the 20 week cut off.
  • First of all, the second trimester ultrasound is done before 20 weeks. This is the second test that can diagnose spina bifida (and where I found out about Nickolas). So most parents would know about spina bifida before 20 weeks (except in my case it was after).
  • The second reason for the 20 week cut off is that according to the government, babies born after 20 weeks need to be registered. Either as a still birth or a live birth, and before 20 weeks they don't (they would be a miscarriage). That is in the hospital. I am not sure how it works for intentional termination after 20 weeks, for example in a clinic.
  • There is also the fact that the age of viability (when a baby born can actually live) is 23 weeks (and it used to be 24 weeks). So abortion is an option until 23/24 weeks (it was 24 weeks when I had Nickolas, I am not sure if that has changed with the advances and change in the age of viability).
    • I stress the 23/24 week difference, because I have a friend and co-worker who had her miracle baby at 23 weeks. He is 2 years old now and very cute! (see page 19)

So in Canada, 47% of pregnancies with spina bifida end before 20 weeks. And I will estimate that this number is due to termination or abortion due to spina bifida diagnosis.

Why do I care?
I have my child, I made my choice. Do I think that I should take away choices for other parents?

No, I don't. I know that I made my choice, but I had a choice and I believe that I have the right to make that choice. 
I believe in autonomy for parents (and then rights for the baby after birth).

Then why even spend all this time looking at numbers?
The numbers show that parents have a choice and almost half make a different choice than me. So maybe I should just get over myself. Get over the belief that I should make decisions for parents.

But I have blogged about diagnosis day, and what information is given to parents before. And I think that is why this number bothers me so much. There is a bias shared with parents after diagnosis towards terminating the pregnancy.

When I was doing my google search, it didn't help that I found a medical malpractice website talking about spina bifida.
Medical malpractice is a consideration for every obstetrician I know. This is what I found on the website (and yes it is Canadian)
When I went to a conference discussing spina bifida and prenatal diagnosis this was one of the concerns of the Obstetricians. They were worried if they didn't discuss (and maybe encourage) termination they could be sued because of this.

And another information website about spina bifida diagnosis.
You have 2 choices. But the fist choice you need to find information, The second choice has another 3 paragraphs discussing it...

So what is my point?

Why this long rambling blog post about the decreasing incidence of spina bifida (2.6 per 10,000 births, but with 47% born before 20 weeks). Identifying that I believe parents have this choice. But that there is a bias towards termination, which I believe helps to contribute to this 47%.

Information and Awareness.

Information to the medical community, but also in public in general. Showing what spina bifida looks like. Sharing our stories. Normalizing disability in the community.
Because Nickolas was born with spina bifida, but being born without spina bifida doesn't mean that disability won't touch your life.

There is still a long way to go.

Folic acid has made a difference in the incidence of spina bifida (9.75 down to 5.59 in 10,000). But concentrating on folic acid is not enough. It helps to prevent.

But what about those babies who already have spina bifida? What about those babies whos parents are desperately looking online in the middle of the night and trying to figure out what the future will look like? Or scouring through written information their doctor gave them (because anything that was said did not stick in their mind, beyond "your baby has...").

What about parents who bring their newborn home, and think that they are alone in the world?
What about parents who aren't sure if something is normal?
What about a teenager who feels no one understands them (especially their parents)?
What about adults who are trying to find medical care in a society that doesn't recognize pediatric conditions living into adulthood and needing care?
How do people learn about current research? Or helpful books? Or connect with families?

My concern is that my association; the one that helped our family right after the diagnosis (and that I support and remain involved in), will shift focus onto hydrocephalus and this information and awareness will start to fade away.

Hydrocephalus is part of our life with spina bifida. 80% of kids with spina bifida develop Hydrocephalus. But other than knowing this statistic, when I was pregnant with Nickolas I didn't want to concentrate on the maybe, the hydrocephalus (and same as with the chiari malformation). I wanted to know the spina bifida.

So I think I have rambled enough.
I will blog about the proposed changes to the Spina Bifida and Hydrocephalus Association of Ontario in a separate post.

Sunday, January 15, 2017

Sledge Hockey - getting back out there

Nick had sledge hockey again today.
He had been off the ice for about a month, and even though we had brought the sledge home, and planned to go skating as a family, we didn't get out.

Leading up to hockey practice Nick was so upset, he was crying.
"I don't want to go".

We told him that he had to go. We talked about why he didn't want to go, and he said he didn't like hockey anymore.
He was crying up until we got him on the ice.

And then he was all smiles.
I was a little hesitant to make him go, but I am glad that I did. He had a lot of fun and I could see him getting stronger on the ice.
I wish we had more time to get him out there more and get him stronger on his sledge.
Hopefully we will all get some family skating time.

Katheryn likes watching hockey, and we have said that we might be able to get her into sledge hockey next year. Nick actually does better (and shows off) when she is on the ice with him.

We went out for dinner afterwards. Katheryn decided she wanted to dress up!

Friday, January 13, 2017

My blog

I have been battling with the direction of my blog for a while.
Both the time needed to properly keep it up to date, the reason for writing, if I even have an audience, and also the privacy of my children and the fact that Nick is getting older and might not want his medical stuff shared online.

I love my blog (even though I haven't been spending a lot of time on it lately). I am always looking for things that would be helpful.I say that I want to blog less and less, but then when I go through my pictures I want to talk about all of it. I want to keep that memory. And I think that is why I want to blog. For myself. As a way to keep my memories alive.

Otherwise, I just have a folder full of pictures and no context.

Do I need to blog about family and every day stuff? Sometimes yes. Sometimes it is looking back at the every day that I see a change.
But then I also want to keep medical stuff private. But why am I talking about spina bifida if not about the medical stuff.

I could make my blog private, but the whole point is for people who have received the spina bifida diagnosis, or people who are looking to see what spina bifida looks like. To find this blog. To normalize spina bifida. And it comes with some medical challenges.

I don’t want my kids photographs to be stolen and used illegally or for some kind of porn website (and I made some changes to help prevent this).
I don’t want to kids to come at me in a couple of years accusing me of embarrassing them and breaking their privacy. And then I hear from families who have gone to my blog or I see if posted somewhere, and I think this is why I do this.

I left my blog for almost 2 months. The last post was about new braces. 7 ½ years of blogging and I end with new braces?! No.

So I am still not sure what I am going to do. I am working to update over the last 2 months. So I guess that means right now I’m going to keep going.

Thursday, December 22, 2016

All ready for winter!

A month ago when we got our first snow fall, I ordered a lap cover for Nick in his wheelchair.
The day of Nick's school trip in the forest (I don't have any pictures, but Nick said they had a special sled for him, and he fully participated and had lots and lots of fun), the cover came.

This is exactly what I ordered:

It fits well on Nick's lap, and I fold the excess underneath his feet.
It is fleece lined, and keeps his legs warm and it is waterproof. So it does exactly what it is supposed to do.

It does have some room for improvement. The sides rub against the wheels of the chair. So I am always pushing it underneath his legs. There are velcro straps that attach in the back
 but I find the back part bulky. But it fits well over his winter jacket.
And it has to come on and off every time.
If there was a way for it to sit flat on the seat of the chair, and Velcro under the seat, and then come forward to be zippered over the lap I think it would work better.

The Woodpecker version is set up like that; instead of covering over the lap, it covers under the lap and zips at the front. Then you can just get in and out of it, instead of always taking it on and off. But it is also twice as expensive. And I worried Nick might get too hot, with the fleece covering his back.

We have gotten a lot more snow this year, and we are all excited for a white Christmas!
Katheryn loves climbing on all of the snow banks

Nick wanted to get out and place in the snow when he got home from school today. So put his snowpants on over his winter jacket and threw him in.

It was nice having all of the snow in December, when we still enjoy it. Instead of February when we are waiting for spring to come.