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.

An anniversary I don't care about

It's been 4 years and I don't care.

The heartbreak has faded, the world is aligned. The anger at the obstetricians has dulled. Our lives are in focus, our faith in each other restored. The grief is gone, and the 'why me' has silenced. There might be some twinges that come and go, but not today.

I'm not looking back at where I was 4 years ago on D-day (diagnosis day). In fact I probably would have completely forgotten about it (it was yesterday), except that I'm planning and thinking about what to do for my birthday and realized that it must close.

I have blogged about my thoughts every year on the anniversary.

1 year - http://www.riddingfamily.blogspot.ca/2010/07/one-year.html
2 years - http://www.riddingfamily.blogspot.ca/2011/07/2-years.html
3 years - http://www.riddingfamily.blogspot.ca/2012/07/3-years.html

I still think of the subway ride home, sitting at the stop light, and the experience of an ultrasound where you know there is something wrong, but don't want to hear the words. Those memories will always be with me. But the pain is gone, it is just a memory, a flicker.

So it has been 4 years since we first found out that spina bifida will be a part of our lives.
And it doesn't matter.
It's a part of our lives, it always will be. I will continue to work on educating people around me, advocating for my family and enjoying the love I get to experience.

 

In learning about the stages of grief regarding perinatal bereavement for my professional education, I can recognize the symptoms that we experienced after the diagnosis. It was odd to realize that the charts they showed us could also apply to what we had experienced after our diagnosis. It's difficult to recognize that we were grieving, and at the time we didn't really identify with this term because we were also celebrating our child.

There is no grieving here.
Love, laughter and a 3 1/2 trouble maker and his sister.
Just like every other day.

Informing the Informer

As I am now a working Monday-to-Friday mother, my blog-writing clusters around the weekend, and if I have a couple of things I want to write about, then I'll stagger the posting through the week.

Well today is Saturday and I don't really have anything to write.
And then I was looking through some of the blogs I follow and found this article.

http://bloom-parentingkidswithdisabilities.blogspot.ca/2013/04/is-selective-abortion-for-disability.html

It brought back some of the questions that came up from the medical conference that I went to in the fall. I thought that I had blogged about my feelings, but I must not have. It was painful and very hard for me to sit through that day. And I do not recommend to any parent to go to a medical conference about something their child has.

The months that have passed since the conference have dulled the feelings and emotions I felt, so I guess now would be the time to write about it.

This is a conference that was directed at physicians, obstetricians specifically, and geneticists, but as a nurse I could go as well. One of the topics to be presented was neurotube defects and current research and news. They were going to talk about the MOMS study and I wanted to hear what they had to say.
I thought I would learn something.

I didn't. Or at least I didn't learn anything about spina bifida that I didn't already know. But I learned something about myself, and about how neurotube defects are seen by the medical, specifically the obstetrical population.

I heard all the medical information, all of the pictures about what forms in the baby and what doesn't, as well as when ect. A couple of doctors that I knew talked. And one of the speakers (the one talking specifically about the surgery in Toronto, was unable to make it).
Dr Church, our developmental pediatrician from Holland Bloorview was one of the speakers. She actually made me cry. She talked about the medical issues that kids have to deal with, but she had a positive spin to it (of course she would - she actually sees these kids). What brought the tears was a comment about how our kids sparkle.
They had another mother come and speak to the theatre full of doctors ect and talk about her experience with her child who was born with a serious medical condition (not spina bifida) and she was very positive and made the point that even though there is a lot of medical information and concerns, it doesn't make a child any less special.

There was a conversation during the conference about informed consent. With an argument back and forth about giving the diagnosis and making sure that parents are being given informed information. Some doctors people saying that giving just negative was enough, that is was true information, others said that it has to be combined with the positives and then there was the argument of how could you know either way. There is no such thing as a fully informed decision, and doctors are fooling themselves if they think they could provide such information.

And the doctor that actually gave me Nick's diagnosis was there. My heart was pounding and my blood pressure was rising and I knew that I had to stand up and say something.

So I did. I stood up and talked about how I received the spina bifida diagnosis when I was 20 weeks  pregnant. And we were told "this is what you child has, you have 2 weeks to decide if you want to terminate." That we were encouraged to terminate, that they said he would have all kinds of difficulties, and how Nickolas does have everything that Dr Church said comes with spina bifida. But he is happy and 3 years old and not anything like what you (as in the doctors) think he is.
My voice was breaking and I was crying a bit.

And I felt like a total idiot.
But Satisfied that I had made my point.
I told everyone at work about how stupid I felt almost breaking down in a room full of people. I think It was worse in my head than it actually was. And I will never see any of those people again.
And I got to feel good about what I did, and hopefully someone will rethink their approach.
Of course I vowed never to go to another medical conference like that, unless it was directed specifically to parents.

So back to the article that got me thinking about that day.
http://bloom-parentingkidswithdisabilities.blogspot.ca/2013/04/is-selective-abortion-for-disability.html (In case you didn't read it the first time)

The article has a number of points in it, including the perception of parents who chose on a selective abortion becaue of a prenatal dianogsis. But I am not raising an abortion issue. I am raising an information issue.

Doctors actually believe that they are giving parents all of the information to make an informed decision when they tell them about all of the medical problems their child may face. They truly believe that combining this with information from families who have faced the same problems would be biased (and their are not-biased, even though many obstetricians have never seen a child with said diagnosis). Not all doctors of course, but a surprising number of them.

The article by Andrew Solomon, published this month in the New Yorker; Medical progress, social progress, and legal regression talks about abortion, both the blog and the article brought up a lot of different points, what really hit home was about how doctors are actually giving the diagnosis and thinking that women are making a choice. A quote from the article

I do see a problem, however, in the speed with which women who have no prior exposure to the conditions in question are expected to make these decisions. Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child. It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement.

I have said all along how happy and thankful I am that I felt confident and comfortable enough in myself and my knowledge to listen to myself, to explore our options and make an informed choice. Along with Kyle of course. How if we had made a quick, scared decision we would regret it, and we would be missing such an integral  and positive part of our lives.

I'm glad that other people are recognizing that there is a need for informed choice, or at least for doctors to recognize that they are not providers of all of the information parents need. That it is not just us parents that are saying it.

Another aspect of what both articles talked about was the perception of physicians about parents choice. I am not going to address this, and I find it very depressing that someone would think that we as a family are less deserving of support because we chose to have our child. That is too much to handle at the moment. I would hope that at least the 10 obstetricians that I see every day and know me and Nickolas are able to provide a more informed picture to parents receiving a diagnosis.

I recognize every day that my life is better because we have Nickolas. We appreciate things, I have a new perspective I might not otherwise have had. And  I have no problem talking to a room of 90+ people, that fear of public speaking went out the window about 3 years ago!

I feel that a follow up letter may be in order.

http://riddingfamily.blogspot.ca/2010/07/letter-wake-up-medical-professionals.html

3 years

It's been 3 years.
3 years since d-day (diagnosis day). Actually 3 years isn't for a couple of days - July 16th I think - but this is Friday the 13th and I thought it was appropriate.

I don't know how to mark the worst day of my entire life.
Except maybe to show other parents that the worst day of their life can't turn into the greatest joy they can know. And review a bunch of past pictures...

A couple of words in a doctors office doesn't describe what life having a child with spina bifida will be like.

The waiting, and wondering and worrying before the big day!

The introduction and realization that he is actually here! In your arms!

The unbelievable, I-didn't-know-my-heart-was-this-big, kind of love

On d-day you can't imagine the joy you hear in the first sound of laughter

The words 'spina bifida' do not describe my little heart breaker

It does not define the things that he can do, or when he will do them.

A diagnosis doesn't tell you the incredible bond he will have with his sister

Or how beautiful your child will be.

Thinking about d-day gives me an opportunity to go through all of the wonderful things I didn't think I would have 3 years ago.

An all-around fun kid!

Who sometimes needs some encouragement, but really just redefines spina bifida every day.

Who is just a little nervous about trying out new things (like the first time he was upright by himself - December 2010)

How a mothers touch can make all the difference, even when you feel you are powerless

They don't tell you on d-day how much your child will love the bath tub and bath time

And waits until everyone is watching before showing off (standing for the first time unassisted - Feb 2011)

And is so proud of himself!

The diagnosis of 'spina bifida' doesn't mean that you won't have a trouble maker on your hands!

Or a silly monkey - with a quirky sense of humor!

A little boy who loves animals and learning about new things

And LOVES, LOVES, LOVES chocolate!

On d-day all you can think about is how your child will be different from everyone else. But that's not true, he will fit right in with your family.

Until he wants to stand out and show he is his own little boy!

And that he really, truly is the coolest boy in town!
(Even with geeky parents)

With a family who only wants to see him smile, even when he is sad

And will light the way on whatever path he wants to take

Spina bifida (and d-day) will show you that you are stronger than you think you are (October 2011 - outgrowing his stroller)

and will help you have an open mind about things that you were always worried about

On d-day you realize that you life has changed forever. But as long as you keep moving forward with a smile on your face you will get to where you were meant to be.

And there will be love

And there will be laughter

And the rest just slides into place

3 years after d-day I only wish that there had been more awareness of what spina bifida truly looks like when we got our news

And somehow in 3 years (OK almost 3 years for this picture) we went from this...

To this...

And I wouldn't trade this craziness for anything!

Anyone wondering about how life will be after d-day should check out this borrowed post Sometimes the Doctors are Wrong Thanks to Jamie for collecting all of these stories in her blog!

2 years

2 years and everything has changed.

I wish I travel back in time to that day. I wish I could be with myself, who was all alone in downtown Toronto and hearing those words. I wish I could have been there when I had to tell Kyle over the phone, because it was 'just a precaution and he might as well stay home with Katheryn'.

I wish I could be there, as I sat on the subway wondering, hoping, praying that this would all go away. I wish I could have been there as I was stuck in rush hour traffic unable to say the words to my mother who was on the phone.

I was all alone, but even in a room full of family and friends, it was still just me. I didn’t know! All I wanted was answers that would not come. I wish I could sit there and give the answers, or at least what questions are important.

I wish when I heard the words 'terminate the pregnancy' I could have been there to show myself that it wasn't necessary. It was a horrible decision to give a mother. In our world of medical advancement, healthcare and great strides in research, why is that even an option anymore?!

I wish I could be there, to sit beside myself and show beautiful happy pictures of my child. Healthy and happy. I wish I could say that spina bifida are not swear words, that it is not a death sentence or quality of life issue.

I wish I could be there to say that everything will be ok. That our family will adapt and be better for it. That the worry and concern about every little thing does not take over and tell myself that spina bifida is not our life.

I remember being worried if we would be able to go to the cottage, if he would be able to swim? Go to school? Play sports? Have fun with his sister? Be part of the family?

All of those concerns that seem so silly on this side of it.

And when I think about how my parents were concerned for ME, how we (Kyle and me) would survive this turn in the road. I wish I could have sat down and showed them that they were concerned about the wrong things.

Don't worry about how life changes when you hear the words "spina bifida". Life changes the moment you see that plus sign on a stick, the moment you wake up in the morning. Life changes! Some changes are expected and some come out of the blue, but that is the nature of life!

2 years ago I wish I knew that doctors don't know all. That sometimes they are horribly, horribly wrong (the words 'burden to your family' comes to mind).

You adapt, you grow, you laugh, you love and you live!
(You really don't care that the kitchen is a mess, but it matches your sons face!)

I remember sitting at a stop light. Staring, wondering, worrying. Wanting it all to be a dream. Why was this happening, why to us, why can't it just go away?! What was my life going to be like, with either choice we made?

I so wish I could have seen into the future, and seen myself now. And know that everything would be ok.

And how in 2 years later everything has changed. And I would never, ever want to take that back!

The Letter - Wake up medical professionals!!!!

This is a letter that I started writing when I wrote my one year post. It got me thinking that complaining about it is not enough. I felt that I had to do something! When I feel the need to do something, to make a change when I felt that 'service' has been lacking, or I have been treated unfairly, I write a letter. And here it is!
I am not sure who I am going to send it to. I am thinking the Canadian Medical Assocation, Society of Gynecologists and Obstetricians, and Canadian Association of Midwives.
I am also encouraging all those other mothers who are as pissed off as I am - write. Write that letter that has been in the back of your brain for the last year, or two or more. Write to people who misrepresented spina bifida to you, and brought you to that dark place before you saw the light - what spina bifida actually looks like.
I am a strong beleiver in the saying 'the pen is mighter than the sword'. Yes cheesy I know.

Here goes:

To whom it may concern,


I am writing in the hopes of improving the experiences of someone who has been given a prenatal diagnosis of spina bifida and hydrocephalus. I have been thinking of writing this letter since the birth of my son, but kept putting it off, thinking it would not change anything. But the more I hear stories of other parents and their experiences; I decided I had to write.


My son was born with spina bifida and hydrocephalus on November 13, 2009. We got his diagnosis one year ago. This is a recollection of our experience.


July 16, 2009. This was the day I went for a second level ultrasound, 21 weeks pregnant and knowing that my baby was a boy and 2 weeks ago they couldn’t see his cerebellum. My IPS had come back negative so I tried not to worry. My regular obstetrician, Dr A, who was a co-worker, encouraged me not to worry. I spent 2 hours having an ultrasound by different techs and different doctors, all who did not tell me what they saw. Finally they told me I could go wait and talk to the doctor, and they gave me some pictures.


The doctor, Dr B, called me in, this was someone that I had never met before but was seeing me as a favour to Dr A. The conversation went “the ultrasound shows that the baby has spina bifida. You are 21 weeks along; if you want to terminate you have until 24 weeks. We will support whatever decision you want to do and if you want to terminate we can take care of that here instead of your own hospital if you want.” The doctor and I discussed what spina bifida was, a neural tube defect, which it was in the lower lumbar, upper sacral area of his back, which the ultrasound had showed. I was told that spina bifida meant being in a wheelchair, wearing diapers for life, being dependent on us, and intellectual problems. Then he said “OK I’ll leave you alone now and give you some time. There is a phone you can call someone and I’ll be back.”


This is what your baby has, you can terminate, this is the horrible things that your baby will be facing, and I’ll be back. I am an obstetrical nurse, but I didn’t have any firsthand experience with this, other than what he was telling me, and what I had learned in school – which was not much.


This is the last time I saw Dr B, who is part of a high risk pregnancy unit. Over the next two weeks we collected a lot of information about what spina bifida meant, and what to expect. My husband and I received valuable, research based information the next day when we saw the genetics doctor, Dr Chitayat, who provided us with up to date information and the support we needed. We were able to discuss neural tube defect, anticipated physical function, hydrocephalus and more. We researched online as well as contacted the Spina Bifida and Hydrocephalus Association of Ontario.


We were further referred to Dr. Rutka at Sick Kids, and Dr Biggar at Bloorview Kids Rehab who were able to show us what spina bifida was and what kids look and act like. Discussing spina bifida with doctors who knew what they were talking about, had worked with, treated and watched these children grow. They gave us a true picture of what life would be like if we continued with the pregnancy; which is what we decided to do.


After we had made our decision not to terminate, about 2 weeks later (at 23 weeks) Dr A pulled me aside at work, he wanted to talk to me. He said that Dr B had called to ask him to talk to me, he wanted to make sure that I was aware of what we were facing with a child with spina bifida. He said spina bifida meant paraplegia, total dependence, mental deficits, the child would be in diapers for life and we needed to think about how this would impact our lives and our older daughters life. He wanted me to reconsider our decision (not to terminate). I was very clear that I had researched spina bifida and did not believe this to be the case and would not reconsider.


For the rest of my pregnancy I had shared care between Dr A and the high risk clinic in Toronto, but not with Dr B.


This experience is by no means unique. In fact it seems to be common place. From discussing my experiences with other women and families in Canada and the United States there was a lot of commonalities in how we were told about spina bifida from family doctors, obstetricians, mid wives and perinatologists. My experience was almost word for word the same as women reported in online spina bifida forums, from families around the world, as well as a support group at Bloorview.


To me, this is scary, as I see that it reflects the outdated knowledge of the general medical profession about spina bifida, who are trying to inform others. I think this showcases the need for further education around the current experiences and expectations of spina bifida.


Our life with spina bifida has given us a happy and healthy son. He had surgery to repair the lesion when he was 24 hours old, and surgery to insert a vp shunt when he was 3 weeks old. He goes to physical therapy and gets catheterized regularly. We have additional doctor appointments and some extra worries, but anticipate a good and successful quality of life. We are confident that he will be able to walk, achieve social continence, attend school and become independent. This is not the picture that was painted for us, and is currently being painted by doctors who are telling families what a diagnosis of spina bifida is. They discuss archaic beliefs and outcomes about spina bifida and say it is fact. And parents believe what they are being told.


I am thankful I did not listen to what Dr B told us, and encouraged us to do. I am thankful I had the fortitude to seek further information and to educate myself and my family about spina bifida. I am saddened to think not every woman who is told such a scary diagnosis would seek further information, beyond what the obstetrician/family doctor/midwife told them, and the consequences of this. I believe that every woman has a choice, but an informed choice. Informed with current research and with reasonable expectations of what life with spina bifida and hydrocephalus entails.


Being on this side of a prenatal diagnosis I think it is bordering on incompetence to give out such negative and one-sided information about spina bifida. Doctors who do not understand about what life with spina bifida entails should not see themselves as being a reliable source of medical information to parents. I believe this is common through giving a diagnosis that is not fully understood by medical professionals who only deal with the healthy norm of the population.


I think there is an opportunity for valuable education for medical professionals to have updated knowledge about spina bifida. I propose you take this opportunity to think about how you can improve these experiences through current and accurate education.
Thank you for your time,


Amanda Ridding

One Year

A year ago I thought I knew who I was. I was happy and had a plan and knew where we were going. Then BAM!

Spina Bifida. And our world tilted a bit. Not that much, just a bit. We are still heading forward and things haven’t changed that much. But a year ago I didn’t know that. No one knew that. All we knew was that our world had changed forever and we were trying to catch our bearings and see what we were looking at.

I keep a journal so it is very easy for me to read back and see what I felt in those days leading up to the diagnosis, but the moment the doctor took me into his office and told me that our child had spina bifida – that is ingrained in my memory and I don’t need to look it up. Maybe reliving it, telling the story from the beginning will help me to let go. I think the one year anniversary is important, the second year not so much. So here goes…

July 16, 2009. This was the day I went for a second level ultrasound, 21 weeks pregnant and knowing that my baby was a boy and 2 weeks ago they couldn’t see his cerebellum (the important part of the brain – well it’s all important – but the part that controls breathing ect). But all my tests had come back ok so I tried not to worry, I even told Kyle to stay home. So I was in ultrasound for 2 hours as they twisted and turned me, had different people come in and then went outside and talked in whispers as I lay in the dark with my baby and my thoughts. Finally they told me I could wait and talk to the doctor, and gave me some pictures.

I didn’t have to wait very long. I had my new blackberry and was sending messages to Kyle. But really what could I say. That I was waiting, and that I was very, very scared. The doctor called me in, this was someone that I had never met before but was seeing me as a favour to my regular OB.

The conversation – that I remember – went something like. “The ultrasound shows that the baby has spina bifida. You are 21 weeks along; if you want to terminate you have until 24 weeks. We will support whatever decision you want to do and if you want to terminate we can take care of that here instead of your own hospital if you want. OK I’ll leave you alone now and give you some time. There is a phone you can call someone and I’ll be back.”

I am not sure if there was more, it doesn’t really matter because that is how I remember it. This is what your baby has, you can terminate, and I’ll be back. I tried calling Kyle, thinking oh my God, what do I say?! I sent him messages but he wasn’t there. So I called work and talked to one of the girls there. Deep breath, ‘the baby has spina bifida and we don’t know what we are going to do’. I finally did get a hold of Kyle and he asked the question I was wondering. What does this mean and What are we going to do?

The doctor and I did discuss what spina bifida was, but I can’t really remember what he said. I remember quite clearly what he said two weeks later and that was that spina bifida meant paraplegia, total dependence, mental difficulties, diapers and just a hard life. And not just an effect on the baby and me, but Kyle, our relationship and on Katheryn. He wanted me to reconsider our decision – but I get ahead of the story. I left with an appointment to come back downtown the next day to meet genetics.

Then I had to fight my way back home during rush hour. Sitting in the middle of the subway (someone was nice and gave me a seat) thinking about what I was told, not being able to look into the future, not wanting to feel kicking and punching in my belly. Could I see anything, feel anything, do anything? No, I was stopped. Staring out the window at nothing with tears streaming down my face, alone in the subway car full of people.

I got stuck in traffic on the way home – yay for rush hour – it must have taken me over 2 hours to get home, but it felt that days. I called my parents at the cottage and my sister from the car. They all knew I had gone for an ultrasound and were waiting to hear that everything had gone well. But then I called and couldn’t talk, needing to take a deep breath and just get the words out. “The baby has spina bifida.” No more Nickolas, just baby. And give out the small amount of information that I knew. The people on the other side of the phone crying. Their world had stopped that day as well.
Kyle, Katheryn and I went out to a family birthday dinner, tried to act normal, not wanting to disrupt the happy occaision. I don't think that we succeeded that well. I know I was numb, just letting everything pass me by, a little blurry, a little grey.

Needless to say, Kyle and I didn’t sleep very well. In fact I think I got up that night and did some internet surfing. What is the first thing that pops up when you type spina bifida? Wikipedia – the horrible, scary site. I didn’t want clinical explanations of what caused it, or why. I wanted to know what to expect and what my child would look like! I finally found a site http://www.spinabifidaconnection.com/ that told me just what I wanted to know. I could actually see real-life children with this, and read postings from their parents.

The next day Kyle and I visited genetics and got some solid information. We talked about a neural tube defect, physical function, hydrocephalus and probably more. We wanted to know definite information. Will he walk, will he play sports, will he go to school? Will we need to find a new house? Do I have to quit my job to stay home? What about Katheryn. But we couldn’t get that information – they couldn’t even say where it was! Just an estimate, and some possibilities. We left that appointment with more information, more appointments and a bit more understanding.

The next couple days are a blur. Doctors, tests, questions and more questions. Going back and forth, what will we do? What are we looking at? I spent my 31st birthday at Sick Kids hospital and Bloorview Rehab hospital talking to doctors and getting tests done. And still thinking, thinking, thinking. I had it down, explaining spina bifida to family and what we were going to do. Everyone was very, very supportive. They were with us no matter what we decided, and not pushing either choice (to continue or to terminate). I am so profoundly thankful for this; I think I might have broken if there was any pressure.

For 9 days we saw doctors, getting tests (MRI, amnio) and reading; reading blogs, internet sites, and information packages, everything I could get a hold of. We made our decision on July 25th, Kyle’s birthday. We had talked about what was going on, what we thought of the information we were told, what we thought, how it would affect Katheryn. Worried about Katheryn and how her life would change.

I remember exactly where we were in the house when we decided. We each asked the other what they wanted to do. Pretty much at the same time we said we wanted to keep him. And that was that. We had Nickolas again.

Our world started turning again, we were pregnant again, and we started our journey with spina bifida. One year ago.

My first blog... ever!
I decided to start this blog to keep everyone up to date on what is going on with our expanding family. I've also found it helpful to read about other blogs of people who are experiencing the same thing we are.

Yes the spina bifida family blog.

Kyle, and I (and Katheryn) are expecting a son (and brother) in November. We found out about 3 weeks ago that our Nickolas will be born with spina bifida, a myelominengecele, the bad one. The worst day of my life, our baby boy has a congenital, non-treatable, disabilitating problem. We were told (at 21 weeks) that in Ontario we have until 24 weeks to terminate. What?! This is the baby that I can feel moving all the time! What are we looking at here.

A little bit about spina bifida first - when the baby is forming, the spine did not close all the way, this means that there is a space in the spine in which the spinal cord comes out (the lesion) and forms a pocket in the back. The nerves are damaged from this point and below, the lower the lesion the better the outcome.
Nickolas' lesion is in the lower lumbar/upper sacrum area - its not the worst, its not the best area to have a problem. Hopefully we are looking at needing braces/crutches to walk. But we won't know for sure until he is born.

We talked with a neonatal neurosurgeon at Sick Kids, a pediatric rehab doctor at Bloorview who runs the spina bifida clinic. We had an MRI, a level II ultrasound and an amniocentesis. Pretty much all the tests/visits we were offered. I'm posting the picture of the MRI and you can see where the lesion is - the white part by the bum (its supposed to be all black).

Otherwise we are hoping for a happy normal baby who will be born with a physical disability. And yes there will be other difficulties and health problems, but this is our SON. We wouldn't ask for this, but he is here, he is ours, and we can work through this.

I think this is it for now. I'll keep you posted as things are developing