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 46.4% 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. 46.5% 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, 53.5% 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.
http://riddingfamily.blogspot.ca/2013/04/informing-informer.html

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 53.5% 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 53.5%.

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.

Shake it off

October is spina bifida awareness month in the US.
The parents and adults in my various SB groups are really knocking awareness up a notch this year!

A group put together this video, they asked for video's from the group to make up this video.
It is so fantastic!



In 5 days of posting, there have been over 17, 000 views!

Other part of their awareness campaigns are #embracethebif showing what spina bifida looks like, and a public group to show photos.
The SBA (American association) missed the mark (like the CEO... who does not have SB... advertising that she has a bum knee and can't run like she used to, as their campaign). All of this is driven by parents/adults with spina bifida.

Take a minute to watch the video and see what spina bifida really looks like!

Nick's Video

I've been looking to update my animoto video of Nickolas to show at an upcoming talk about spina bifida (it looks like I won't be able to do the talk anymore, but I still wanted to finish the video).
I am updating my video I did about 18 months ago to show off Nick as an introduction into what spina bifida is.



I was looking at the video from last year and though how much bigger he is, and how much more he is doing. And just wanted an updated view of meeting Nickolas.
He has grown so much!

Now I need to work on Katheryn's video!

Spina Bifida and Hydrocephalus Awareness: Week 4

It is the final week of awareness. I'll admit there were some days that I couldn't think I'd come up with 30 different things to talk about. But after a while it just flowed.

Spina Bifida and Hydrocephalus Awareness: Day 24

Social relationships are also important within our big family of spina bifida moms.
Just as it is important to have someone to talk to and be just a regular mom, it is also important to be able to talk to someone who just gets it.

There are a number of outlets for this. I was lucky that there was a parent-baby group for the first couple of years when Nick was younger (until they cancelled it) to actually get together in real-life. Social media has replaced a lot of that personal interaction, but it still has a group of people who just get it.

Baby Center has a group Spina Bifida Kids, there are a bunch of facebook groups (including Living with Spina Bifida and Take That! Spina Bifida) and of course my own group Our Lives, with spina bifida for family, parents, children and adults with spina bifida who live in Ontario. And I can’t forget all of the blogs that are out there (including my own).

During the first couple of years after D-Day I scoured these blogs and groups and tried to find what life would hold for us. Until we just started living our own. Now I use these groups because somewhere out there someone has the same thought as me, or are thinking of the same surgery, have the same concern, or just want to vent. It is for those questions that you want to make sure you have all the information before you get the doctors opinion. As well it gives me the opportunity to give my own experiences to others.

Spina Bifida and Hydrocephalus Awareness: Day 25

I talked about Hydrocephalus and a shunt waaay back at the beginning of the month. But what is a Shunt?

If hydrocephalus is too much cerebral spinal fluid in the brain, then is there a way to take that fluid and put it in part of the body that can absorb it?

The VP shunt has been used to treat hydrocephalus since 1949, and the valve in the shunt was designed by a father (John Holter) of a child with spina bifida and hydrocephalus who just needed to DO SOMETHING, and thought that he could. And he did, creating the Spitz-Holter valve, a design that is still used today. This father continued to manufacture the shunts by hand, supplying over 500 a year.

 

 The shunt is 2 catheters and a valve. One catheter is inserted into the brain (into the ventricles) to take the fluid out, then through the valve (that is located against the outside of the skull) and takes the fluid through the other catheter, down the body, (under the skin) into the peritoneal space in the belly.

There are times the shunt stops working (called a shunt malfunction) for various reasons. This is an emergency as the fluid that is normally being drained is now building up in the brain. If this happens then it needs a shunt revision.

Symptoms that we are always on the lookout for a shunt malfunction includes

·         Headaches
·         Vomiting
·         Excessive sleepiness, can’t wake up or stay awake
·         Irritability
·         Vision problems
·         Changes in eyes, including crossed eyes, uncontrolled eye movements, sunsetting of eyes
·         Seizures
·         Personality changes

The shunt is not a cure for hydrocephalus, just an ongoing treatment.

 

Spina Bifida and Hydrocephalus Awareness: Day 26

Today is Nick’s last day of school. So I’ll talk about learning and that spina bifida and hydrocephalus are associated with learning disabilities.

 

Just because there is an association doesn’t mean it will happen, but being aware of different ways that our kids might learn can help to make sure that Nick succeeds. Anticipating.

I have a whole book all about this (thanks to SB&H). So there is a whole range of different things and areas that Nick may or may not need help with over the next years.

Information processing is the area that kids with spina bifida and/or hydrocephalus may have problems with. Numbers and symbols, visual-spatial processing, making connections and organizational skills are all identified as areas that may be difficult. Kids with spina bifida seem to have a cluster of strengths and weaknesses identified as ‘non-verbal learning disorder’ (NLD).

 

Knowing that these are areas that may cause some frustration and trying to problem solve how to help Nick learn. And more importantly identifying strengths and working on these.

 

We are just at the very, very beginning of our school-learning adventure and I’ll probably know a lot more over the next years.

 

 Spina Bifida and Hydrocephalus Awareness: Day 27

We had Nick’s neurosurgeon appointment this week. To review our yearly brain and spine MRI and to look for or rule out tethered cord.

Tethered cord is the next battle to watch out for. Usually is will occur around the age of 5-10. The spinal cord usually floats free in the spinal column, protected by all of the vertebrae bones in the back.

 But with spina bifida, the spinal cord is held in place by the scar tissue that is created with the original myelomeningocele repair. So as the child grows and gets taller the spinal cord is held in place (tethered) by the scar tissue. This causes it to be stretched and damaged or have limited blood supply to the cord.

There are a number of symptoms for us to watch out for. They aren’t necessarily obvious, but sneaky signs that you might not notice from day to day. These include a change or decrease in sensory, muscle weakness, pain or a change in bladder and/or bowel function.

There is surgery to untether the cord. Surgically loosening it from the scar tissue. This won’t improve any function that has been lost, but it will prevent further loss of function. But doing surgery to untether from scar tissue will actually create more scar tissue. Then that scar tissue will tether so another surgery will create more scar tissue and it is a cycle.

So it is a fine line between maintaining function and preventing surgery and scar tissue.

 

 

We got the all clear by our neurosurgeon this week. But it is still on our radar.

Spina Bifida and Hydrocephalus Awareness: Day 28

It is in one month that Nick is going to have surgery. It is bowel surgery, because while I’ve talked about a lot of the issues regarding spina bifida this month, I didn’t really touch on the bladder or bowels. The nerves to the bladder and bowels are damaged.

The bowels don’t really want to work. So we have a lot of constipation and continence issues. We have been treating this for the past 4 ½ years and tried all kinds of options. The surgery option have been reached after a lot of trial and error and consideration. It will have a profound impact on Nick’s daily life and independence.

 The surgery is called the MACE which stands for Malone antegrade colonic enema. It allows a catheter to go into the belly button, through a one-way passage (stoma) created in the appendix (which is attached to the colon) and allows enema solution to be given directly into the top of the colon. When the catheter is removed the belly button looks like a deep belly button. After it is healed, it doesn’t need anything to cover it.

This way of giving an enema (as opposed to the traditional way) is more effective in preventing constipating and improving continence as the colon will be empty and prevent accidents through the day. It also allows Nickolas to gaining independence to be able to do this himself.

 We are 1 month away, I’m nervous about what it will be like for Nick having surgery, anxious for the recovery to be started and then finished, but know that this will go a long way in Nick’s quality of life.

 

Spina Bifida and Hydrocephalus Awareness: Day 29

Latex allergy is one of those funny things with spina bifida. There is something about having spina bifida that makes people prone to having a latex allergy.

Historically they thought it was because of the early exposure to latex through surgery, but even after ensuring latex precautions immediately (I insisted on latex free from delivery) severe latex allergies develop. So we treat Nick as if he has a latex allergy.

Natural rubber latex (not the fake stuff) can cause severe anaphylactic allergic reactions at some point of exposure. The more exposure, the more likely to develop the reaction. Natural rubber latex is in a bunch of stuff, including many of the ‘all natural’ products. It in a surprisingly number of regular use items.

 

 

Our biggest worry and no-no is latex balloons and latex gloves. These are made by pouring latex into a fine coat to make the stretchy, rubbery surface. When balloons are popped or gloves are removed it releases latex into the air.

As well anything that goes into the mouth (i.e. dental products, pacifiers, nipples) or remains on the skin (i.e. bandaids) or that is obviously rubber (i.e. rubber bands) are not in the house.

Spina Bifida and Hydrocephalus Awareness: Day 30

I thought I would end my month of awareness with a PSA thanks to a fellow SB Mommy Joanna.

And that is it.
I hope over the month that I have helped to increase awareness and helped you to learn something you might not have know.
And at the end of the day, even with all of the medical stuff and concerns, this is what spina bifida looks like.

Not because he was born with spina bifida or in spite of being born with spina bifida. But because he is Nickolas, a little 4 1/2 year old boy who LOVES AND LAUGHS.

 

Spina Bifida Awareness video - 2014

With the month of June, it gives me an excuse to update all of my awareness videos.
I updated the pictures of Nickolas now, and some of the 'educational' slides as well.

And yes the video still makes me cry

Spina Bifida Awareness and Spirit

It is June!
And with June come sunny weather, the end of school, thoughts of summer vacations... and Spina Bifida Awareness Month and our annual Spirit Wheel Walk Run

Come Join Us - 2014

I updated our pamphlet, not just with pictures of Nick but some of the content as well. And pictures that mimic the actual colours of the SB&H logos.

Pamphlet - SWRR - 2014

A new part of fundraising this years is the creation of a Canada Helps donation webpage. So it is very easy to donate to Nick's walk.
https://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=37416


There is always information in my Spirit Wheel Walk Run at the top of the blog. And you can look at group pictures over the last 4 years.


I have a goal of $1000 this year, but it isn't just about the funds, it is taking the month to create awareness and show off what spina bifida looks like!

Our Fourth SWWR

I can't believe that this will be the 4th time we have had a group of family and friends come out to walk with us. To take the time to show their support, and to care, really care about raising awareness about spina bifida.

Our walk this week is going to be Sunday June 23rd and will repeat our walk from last year along the Oshawa Lakeshore.

Pamphlet - SWRR 2013 by Amanda Ridding

Over the last 4 years we have gathered for a weekend in June, in rain and shine, hot and cold. But we have gathered and we have walked. Even years that walking was not an option for everyone, they still came out to cheer us on. To cheer Nick on.
And Nick's Cheering Squad is still going strong.

2012

 

2011

2010

So this year we are going forward with another Spirit Wheel Walk Run.
If you are interested in support us this year you can make online donations at

http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s10136

Click on 'donate now'
Enter donation amount
Choose the 'Fund/Designation'
Pick SWWR- Nick's Cheering Squad (Ridding Family) from the list.

Thank you!
If you are interested in joining us this year, we will be meeting at the beach of Lakeview Park, Oshawa. Picnic to follow.

Spreading Awareness

June is Spina Bifida awareness month in Canada.

I had some co-workers suggest putting together something quick to educate everyone about spina bifida.
So this is what I put together.
5 minutes to balance education and the scary medical information, with what that actually looks like.


Yes spina bifida has diagrams and long words and scary pictures.

But what is really important is the sound of laughter and the look on your child's face when they look at you, and the sound of their voice they tell you they love you.

What's New at SB&H?

You might recognize a face on the home page of the Spina Bifida and Hydrocephalus Association of Ontario.

http://www.sbhao.on.ca/

Or on the facebook group page...

How lucky I am to see that face every day!

Watching you smile

I am going to be doing another talk at Centennial College in a couple of weeks.

I love being able to have Nickolas with me, to really put the face to spina bifida. But unfortunately he won't be able to come with me.

And next year he will be in school.

So I created a video to show at the beginning of my presentation.

I had alot of fun making this.

Now I'm starting on one for Katheryn!

Cover Girl

This month was very exciting for us, I spent almost 2 weeks checking every magazine stand we passed. Because we "know" the cover girl of the February issue of Parents Magazine! Her name is Emily and her mom blogs just like me. Emily is just 6 months old than Nickolas and was also born with spina bifida.

I finally found it! Of course as soon as I found it, I had to take a picture.

I wanted to show it and share it with everyone. When I was paying for it the cashier shared that her brother uses a wheelchair. I showed my sister, the girls at work, friends I saw.

When I got home I showed it to the kids. Nickolas thought it was great that she had a gold walker! Gold! And Katheryn wanted to read the magazine and look at the pictures. We had a little talk about why it was special that she was in the magazine. That she was born just like Nick, with a boo-boo on her back.
They were both impressed that someone was just like Nickolas. And Katheryn wanted her picture in a magazine.

Emily on the cover of a parents magazine is not a little thing.
It is the first time a child with a disability is on a mainstream parents magazine. I want to put it in every obstetricians office, screaming "this is what spina bifida looks like" just like any other kid, only with a walker and some cool braces. She is adorable and happy! There isn't any article in the magazine talking about what it is like to have a child with spina bifida, the article she is on is about making valentines day crafts.

There is a quick little blurb about the cover girl on the first couple of pages, and it talks quickly about what spina bifida is. Online there is an interview with her mom, and a follow up blog from a writer for Parents magazine.
I'm not sure what I like better, that the purpose of her being the cover girl in the magazine was just because she was super cute, or that it gave an opportunity to show what spina bifida looks like. It's kinda contradictory that I'm glad the article she was in had nothing to do with spina bifida while showing off what a child with spina bifida is like.

Some Spirit

This year we have been a bit lax with our Spirit Wheel Walk Run for the Spina Bifida and Hydrocephalus Association of Ontario. I may have mentioned it before...

But today is the day!
The kids thought it was so cool that we were all wearing the same shirt!

We decided to try out a new location this year.

Starting at the Oshawa beach in Lakeview Park.

Somewhere to keep the kids occupied while we organize ourselves...

But not too exciting that they have a complete meltdown when it's time to go.
And of course it is a beautiful background for some pictures.

Here is our group of walkers
Thank you so much for coming out and walking with us!
Cheryl, Lisa, with Emily (broken hand and all) and Hannah
Gwenda and Gord Bartley
Jamie Mack (Laura sent her regards)
Jennifer Daviau and kids Emma and Mason - who were a big help!
Antonella and Alejandra and friend (sorry I don't have her name) with 2 month old son
of course Kyle, Amanda, Katheryn and Nickolas Ridding

Special thanks to my in-laws Marie with Shannen and Madison and Austen who helped with all the set-up, food, but weren't able to walk.

We got our family picture right before setting off.

We have a vareity of different 'rolls'
a wagon,

a wheelchair,

2 strollers,

even a scooter - but I don't have a picture.
No bikes this year.
There was lots of space to have a rest and let slower walkers to catch up

Even injured walkers did a great job!

Mostly we all stayed together

And had a chance to chat, catch up
And think how lucky we are to have each other.

Craziness and all!

The weather and the walk was beautiful
We had all sun, sun and sun!

And alot of the walk was surrounded by green and water

I recently found out that all of the trails in Oshawa are completely accessible!

Something that makes those boring summer days a little better.

We walked for over an hour and then took a bit of a breather before turning around and heading back

I even got a bit of a break from the camera - when Katheryn wanted to play photographer!

And then we were off again!

Nick got tired of his wheelchair and wanted some wagon rides

We set everything up in a little unused corner by the beach for our own picnic!
We had lots of people walk by and see our sign
Mental note for next year - definitely print out some of my information pamphlets for anyone who is interested (I say this every year)

We had a good layout of food

Nick has his favorites!

Nick had some time to walk with his walker - but no luck on the sand

We had Lake Ontario all ready and waiting for some cool down time!
Nick got brave...

Katheryn got braver!

The key a successful walk is to end ALOT dirtier than you started!

I think we were successful!

From beginning to end of our walk I think we had a great time!
We had friends and family, awareness and food.
We had wheels and feet and matching shirts.
We had fun, we had sun and even some shade when we needed it.
And it all ended with a good dip and sandcastles!

I don't have a total for what we raised, but I think it's somewhere in the $400 range.
Not nearly as well as we have done in previous years, but we certainly showed what spina bifida looks like!
If you feel like donating - http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s10136 is the site, and just pick 2012 SWWR - Nick's Cheering Squad (Ridding Family) from the pull down menu. Or of course I can take donations in person or at work - until the end of June.