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

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.
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 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.


2 comments:

  1. I have often had these same thoughts Amanda, when they talk about this decrease in sb births like folic acid is this miraculous breakthrough and i cant help but think, mo they are all just killed at the first mention of sb. My sons was not detected in any screening in 2014, altho as you know he has myelomeningocele like your son. It was found by coincidence when I went in for my bladder. I was just under 27 weeks. He was a big baby and very healthy otherwise. They offered to terminate. They said it's not legal at this hospital but we can send you somewhere that it can do it. I asked is this actually something ppl terminate for? And he said yes, most do. He had not seen many that continued the pregnancy. I said, I'm almost 7 months pregnant...hebcoukd be born now and survive!! The Dr said, yes absolutely he could. This was so sick and twisted to me. I couldn't help but think, I came here to make sure that my bladder is ok and ensure that baby is safe, and now we are talking about killing him! How can our focus here have shifted so drastically? The following day i met with a panel who also encouraged me to terminate. They then encouraged me to have an amniosentesis, which I said no due to the risk to the baby. They essentially said, well then that would be your fault if you lost him, like as if I should hope for that. I know this isn't a debate about termination, but I know that the decrease in sb births is due to termination. I hope folic acid helps but as you said, the focus of the sbha NEEDS to be on assisting the amazing individuals who are loving with sb and those who support them to help them live healthy and full lives! I have to say that I am actually jealous of the down syndrome association! They do SO much, they have events all the time, that involve the kids, they have created such a strong, close knot community of support, it's actually like they gained a new family thru their childs diagnosis! I'm rambling now, but just wanted to say I hear you sister and we need our sbha to focus on helping our kids who are here, alive, amazing and deserving of the support.

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    1. Sorry, that it would not be my fault if I lost him due to an amniosentesis...so it would be an easy out...ps i only selected anonymous because I don't have a profile, it's chevys mom, Ayme. Sorry for the typos!!

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