Miracle

I have sat in a room with my doctor and been told that continuing the life of my child would be detrimental to our family, to his life and to consider the hardships continuing with a pregnancy would bring to my daughter.

 This is a doctor that I know well and respect. And he believed everything that he said to me. There was no malice, he was not trying to harm me or my family. He believed that there was no value in life with spina bifida. That this was compassion and offering truth.

I still respect this doctor. And when he sees my son, and hears our stories and sees the videos, he talks about miracles. But my son is not a miracle. Nothing magical happened that made his life with spina bifida worth living. He is not a medical miracle who beat the odds. But in all honesty, with 60-80% of pregnancy diagnosed with spina bifida being terminated, regardless of gestation, in this day and age, in Ontario, in Canada. He did beat the odds.

We beat the odds. To bring love and laughter into our lives. Many things that are expected with spina bifida have happened.

But what my doctors see is the person, the boy, and not the spina bifida. And calls it a miracle

Yes we have spina bifida in our life, but it does not define us. 

Life with my son is so much more than spina bifida, more than hydrocephalus. Life is more than a string of diagnosis’s or a series of hospitalizations.

Life is the big baby belly laugh at 3 months old. The mischievous grin at 3 years old, and the full-on peal of joyeous laughter at 8. Life is about struggling in school, feeling different and falling down. Life is about getting back up, taking one step at a tie and moving forward.

The last 6 months have held our hardest and scariest and most out of control spina bifida (but really hydrocephalus) moments. All of which are not unexpected by themselves.

A shunt malfunction. It feels like we train for this every day. Only it had been 7 years. But we identified it, sought help, had a plan, knew what to expect. No unexpected, it was alsmost like we were newbies in the hospital.

Then a malfunction, a risk after a surgery Plans, contacts, identify and learn about wound infections, treatments, more infections, EVDs (external draining device… so an external shunt), picc lines and more treatment, surgeries and scars. It looks scary on paper. All of these things! These diagnosis’s, these conversations, waiting rooms, recovery, hospital stays and bravery beads. But you take each step back with another step forward. Looking forwards, even if you need to cry and scream in the shower.

Then it all happens again. Step back, fall back, lose control. You can’t fall apart because you need to help hold him together. Everyone asks how you di it. How strong you are, how brave. But you don’t feel strong, you don’t feel brave. You just feel yourself. A bit shattered, a bit scared and angry and jealous. Jealous of all of those other parents who don’t have to worry all the time, who don’t know what it is like to have a diagnosis

But step by step, plan by plan you move get home. You get your boy back, life back and it seems like a nightmare.

Nick says he doesn’t feel brave or strong. But it isn’t about strength and not being afraid. Life with spina bifida and hydrocephalus is not being pushed down, not giving up and not allowing fear to rule, to stop you. Even after 83 days in hospitalizations, 10 surgeries, 13 scars, 3 EVDs, 2 piccs, 4 shunts, and many, many bravery beads (3+ strings)

After all of this, and as life normalizes again you realize that all you need are smiles and laughter. You treasure every day and you love stronger, appreciate longer and just live your life.

That is our miracle.

Moving on

So now that the decision has been made, and the process is starting for Hydrocephalus Canada, I have to look at what I am able to do.

Because when it is something I feel passionately about, I don't like standing in the sidelines. I want to do something.

That is how my facebook group started, when our parent group was cancelled. To try to keep the support network we developed with other families. And actually get to know people and families. Not just facebook friends who live in a different country. But actual support from actual people, who you might not meet... but you could. And Ontario problems and solutions and resources, which are different from what is the in the US.

We slowly started with about 5 people in that group. Now called Our Lives, with spina bifida - Ontario and has 64 people in the group. It's not the most active group, but people do post and comment and ask questions, and get help. I've actually met up with some people through the group at various appointments.

So now with another change, another break up, I have to look to see what I can do.

What can one person do? But what if it wasn’t just one person? I have talked with other moms who feel the same way I do. Maybe in the digital age of facebook and websites an actual organization is an outdated concept?

The original organization started 40 years ago as an idea, a need in the community, and probably started with a number of parents (or adults) who came together to form what was the SB&H. But I don’t actually know.

So if I am now looking at an idea, a need in the community. What do I want to see? What do I want to do to try to fill this need?

So what is my wish list? What do I want out of an Ontario Spina Bifida Organization?

1.      Networking is number one. Networking with other parents, with adults, with parents and with health professionals.

2.      Children’s books and resources. I love finding books that are appropriate to Nickolas (and Katheryn) and buy and collect anything I can find. I love(d) that the SB&H would send us new books and materials.

3.      Current research. What is out there, what is new. Is there anything that is interesting to us, impacts us, or can help to educate us?

4.      Research opportunities. Because that is just me, and I love participating in research

5.      Education.  Education opportunities, presentations, current research, healthcare professional experiences, sporting experiences or just anything that is educational. An opportunity to go to conferences would be wonderful.

6.      Community voice and presence. This would also go with fundraising, (which is not actually on my wish list, because this is just a wish and wishes don't need money) but it is more than that. It is the opportunity to show this is what spina bifida looks like, and show the community until it is just known.

7.      New parent support. I remember getting a care package when Nickolas was born, it was so helpful to have the resources (and knit hat and sweater) and know there was a community out there that cared about us.

8.      Ongoing support. More than just networking, but actual information and support. There is online material that I can find, if I know where to look. But age appropriate, what to look for, how to help. Something that complements what we learn every year

I have tried different ways to connect people in a community. To help people, but also myself, to feel connected and not alone. To know there are others who have done something similar, or be the person to help someone who is lost and not know where to start.

I have my person blog, my I want to learn about Spina Bifida blog, presentations to the college, facebook page, activity in other facebook pages, I have been with another mom when she had her baby (and I loved doing that, I wish I could do that for every new mom!), I’ve tried writing my own book (and I have a draft I’m working on). All of this to connect with a community, to see if something can get help by why I have experienced.

Maybe it is the nurse in me. Wanting to help. But I want to do something! I am just not sure what it is yet.

I have the facebook group, which gained 2 new members this month. I am always excited to get more people connected! I know there are more out there, but I don’t know how to reach them yet.

I have lots of ideas about how to move forward.

Do we start an organization connected with the Canadian Spina Bifida and Hydrocephalus Association, we are not anywhere near that right now. But as Hydrocephalus Canada moves away and creates a void, something needs to move in. Could I be involved in that?

Can we meet! Can we organize some type of event for as many spina bifida families in Ontario to actually get together and meet face to face? I have thought about this idea many, many times. At my annual SWWR I tried to connect with different families, but the most I had was I think 4 families at one event. Every time I think about it, the time slips away from me and then it is too late.

I’m wondering if I can beef up Our Lives, with spina bifida group. Add some documents (books, current research, research opportunities, links to presentations), a poll about what people would like to see in the group, dates and events.

• And I so want to do a video like the Shake it Off. But with Nick’s favorite song Anything, by Hedley … the clean version (which Jill had first suggested). I love listening to Nick sing “I can, I can, I can do anything”

I think now I have a couple of projects to work on, to try to direct my angry energy into a project

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.

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

Our community - part 2

I don't know if anyone remembers that I made a post about our community last year some time. It was long and talked about all of the great moms and families out there.

When there is some news that really hits our community it is great to be able to be a part of that. For example when the MOMS study came out, and when the Paul Reiser show started (with an actor with spina bifida), as well as spina bifida in different plot lines on TV. And of course there was Shea, our Shea  - who just met his forever family (yay) and has officially been adopted! Shea Matthew Kulp!!!. A face, a mission and a miracle.

Yes this is a community of people where we share a diagnosis. But it goes beyond that. It goes beyond shared experiences, an understanding of exactly where you are right now. It's more than hopes and dreams and fears and nightmares and days where things go right and days where things are boring and nights are long.

There are many people that I refer to as friends. I have a friend who's child used this, or did that... Most recently it was, I have a friend who's son is going to be born with spina bifida. No, we hadn't met in person. We 'met' on the baby center forum, talked through there. Talked on facebook and BBM. Technology is amazing!

And then I found that I had something that I could offer. I've been in this game for almost 2 years, I may not be an expert, but I am a mother, and that is as close as you get to excellence! I am also a labour and delivery nurse and come from that knowledge background as well.
So I offered myself to this member of our community, who I had never actually met before, but really felt I knew. I offered to be part of her support in labour, to be there for the birth or however I could help.

I was very excited when she said yes. It was almost as if I could give back to everyone who had helped me. Or to Pay it Forward. Alot of time we feel powerless, but this time I was able to have some power, support and knowledge.

I have to say that the waiting room is a horrible place to wait! But it is worth it! I am not going to post any pictures or information - I'll leave it to Shayna to brag about her son (and how great they are all doing). I was able to be there and ask questions and offer support and the knowledge of my own experiences. Almost like a What to Expect, When Expecting a Baby with Spina Bifida.
And I had alot of fun doing it!

With my amazing experience I wanted to just talk about our community again. How much it means to me, and how proud I am to be a part of it.

People in my life have heard me talk about our community. Different moms and who is doing what. Sometimes I wonder about mom's who don't have access or knowledge that there is a community out there. Moms who aren't online. I would love to connect with more and more moms. In person, online - I love it!
I'm trying to get a mom and baby group with some moms that live in my area (we have 3) and I'm always wondering how to let people know that I'm here, I'm waiting to meet you! And I'm not the only one!
Just last month another of my spina bifida mommy's (because I've called rights for all of you!) Jill posted something very similar.

How to connect, how to grow our community?

I don't have an answer. Except to be out there, be visible, be verbal, be brave.
I have a bumper sticker on my car - I love it! It reads Someone with Spina Bifida Makes Me Proud, Everyday.


I've also recently connected with another mom who just got a lipomeningocele diagnosis for her baby girl. She was referred to me by a family member who knows how involved I am in all of this. I was glad I was able to offer some support and some good websites. I remember how dark those days were just after finding out!

Our mom and baby group has wound down for the summertime. Which is really lousy because I look forward to connecting at those monthly meetings! But we've all exchanged infomation, and will hopefully be able to organize some things in the summer.


I have some brainstorming ideas of how to make our Ontario community closer. When I have the time and energy I will hopefully pursue some of these ideas. Meetings? Baby groups? Zoo trips or visits? Connecting with out-of-towners? Local Rehab Center, Local SBHAO chapter? Not sure what my steps should be.

But - exciting for us!! We are going to be able to get together with Jill and her family this weekend. We get to meeting little Kingsley! (Yes you can all be jealous).


It's really nice to sometimes be part of something bigger, and know that you are never alone!

I'm really sorry if this post doesn't flow very well - I actually started it 3 weeks ago, and just hadn't 'polished' it enough. But I still wanted it done and posted. So here you go!

The Power of Positivity and Prayer

We are a community that is ready to take over the world! I really meant to post this yesterday. But somehow life got in the way of my blogging! Funny how that happens.

Today at Noon (EST) another mother has organized (if such a thing can be organized) a Worldwide Day of Prayer. Prayer is very  powerful, but for those people that do not pray or wouldn't participate because of the religious undertones of prayer I am suggesting just taking a moment, a minute or an hour, to think. Think positively, but think about spina bifida and the joys this brings to your life. Think and be thankful for children, mothers (and fathers), family and friends for what they bring into your life.

Please send positive thought to all of those parents who are struggling with an unimaginable decision. That they can find peace and strength. I know that when we decided to continue with the pregnancy I was filled with peace from this decision.

After Nickola was born, I had a number of moments by myself and with family or friends in which we marvelled that THIS was the child we were asked to terminate.

This is Colleen's message to everyone who is joining us in an hour of Worldwide Prayer:

October is Spina Bifida Awareness Month (in the US), and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are be...autiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.


We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:


1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.


“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

Please take today to invite others to think about what spina bifida, what disability and what life means to them. Lets take an hour to change the world!

Today I am a mother....

I think in my post yesterday I was a nurse.
And I even feel a little guilty about that. I feel that I should have a post praising my Nickolas and all of the other children and families who are here today. Not 'defending' someone took all of the good out of our lives. Who reminded us that there are people out there who thinks that a child with spina bifida deserves to die, or to never be born.
But I also had to recognize that I once faced that agonizing choice. The trial by fire. But I emerged unscathed. I triumphed. And I have the scars to prove it! (I was thinking that metophorically, then thought yes I do have my c-section scar.) And Nickolas has his scar. His scar that I am so proud of.

But today I am posting about love and joy and a choice to take a step of faith. Today I am posting about the amazing mothers and children that I have loved reading about and getting to know. I am proud to be a mother of a child with spina bifida. I am proud to have made my choice.
Today I am a mother and I am proud.

Spina bifida is about so much more than doctors appointments, medical jargon and surgeries. It is about love, hope and faith. It is about laughter and joy. It is about a child who teaches the parents what it is like to live. It is about miracles and much much more than milestones and accomplishments.
It is about being aware and proud and about redefinitions. It is about finding a family who knows exactly where you are and where you are going. It is about finding confidence and courage that you didn't know that you had.
That is what spina bifida is to me.
This is what every mother who blogged over the weekend about how much they were devastated and disgusted about what had happened in our community. I think this is the blog that I should have written as a mother.

Please look at other mothers who took this opportunity to express their joy at their children who also have spina bifida, who are not defined by a medical diagnosis, and are the best things that happened to their parents.
Joanna and Jet
Jill and Kingsley
Nicole and Annabelle
?Jen and Charlie (sorry I couldn't find your name - bad me!)
Selina and Madison
Kimberly and Jonathan
Star and Tanner
Sara and Ruth
Stephanie and Nathan
Cassie and Caleb - definitely check out Cassie's site - she is showcasing different kids with SB every day this month! - Nick was there with all of his superstar buddies!
Kari and Toby this site also has postings from other moms as well - great central resource!
Mom Dugan and Brenden - sorry I couldn't find your name!

I am SURE there are more postings out there. On top of whatever is on BabyCenter and facebook.

And because it's Monday - Lets talk about some meterstones!
-babbling - FINALLY - dadada and bababa are the favorites
-getting on his hands and knees - when he is angry or excited
-resting on his knees and playing with something elevated
-following directions - putting a ball in a basket when asked
-Eating table food
-actually eating any food he can get his hands on - he's our little land shark!
-Not falling over AT ALL when sitting
-Reeeeeaching forward for things until he is allllmost over onto his belly
-Knowing what he wants - if he wants to put his fingers in your ear, he pushes your head away
-Sleeping (mostly) through the night
-Cut his 5th tooth!
-started on milk! (Goats milk - great for the constipation problem) though a sippy cup
-entered into a battle of wills with his mother (has alot to do with the above point)

Sorry no pictures!
I was crazy busy last week, I presented my Master's (of Nursing) Research at a conference (and won an award) - Yay for me! And things have not settled down since!
I promise picture this week!

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.

The Walk!!!!

From Left to right - Kyle, Gwenda, Laura, Michael, Lisa, Amanda, Nickolas, Cheryl, Marie, Shannen and in strollers Katheryn and Nickolas (the others stayed off camera)

We had our Spirit Wheel Walk Run yesterday. And raised over $2400!!!! I still have more donations coming in, and won't have a final amount until the beginning of July. To say that I am surprised and flabbergasted by all the support we have received would be an understatement. Our goal had been $1000 and 10 walkers and we ended with 12 adult walkers and 4 kids in strollers.

Thank you to our walkers:

Amanda, Kyle, Katheryn and Nickolas Ridding, Gwenda, Michael, and Laura Bartley, Marie, Shannen and Madison Ridding, Lisa Aubertin, Cheryl Parsons, Mike and Devon McDonald and Andrea and Zivah Smith. My father Gord Bartley decided to sprain his knee 2 days before the walk and wasn't able to make it. Katheryn, Nickolas, Madison and Zivah were our junior walks, but enjoyed the ride in the strollers.

We walked along the Durham lakeshore, from Liverpool pier to Rotary Park in Ajax, and then turned around and walked back. The weather was.... interesting. It was hot and sticky, but nicer once we got a breeze from the lake, and then it rained off and on, but usually just enough to cool us down and put on rain jackets, before needing to take them off again. Afterwards we went to my parents for a party and the sun was out and we relaxed by the pool. And had a couple of dips as well (sometimes as a result of a couple of bear hugs).

So this is the kid we are walking for? He was wearing his shirt that says This is what Spina Bifida Looks Like. And he smiled and blew bubbles the whole way!

Sister Katheryn is celebrating the walk with the rest of us - with her lei's and pinecones.

I'm already thinking about how we can do this for next year! (I think doubling the walkers and the amount raised is a start)

We are in the news!

Nickolas in the news - Oshawa Express June 16

Pamphlet - to view click on full screen

Pamphlet - SWRR

June is SPINA BIFIDA AWARENESS month

Hi everyone,
It is my first spina bifida awareness month. Anyone in Ontario may have noticed that at liquor stores there is a tin by the cash register asking for donations and awareness of the importance of folic acid. I had vaguely noticed these before but never really paid that much attention to it. Well now I do.
Folic acid [sorry Jill I have to mention it] is believed to decrease the chance of spina bifida occuring (not always - as I was taking prenatal vitamins when I got pregnant). And the folic acid initiative has been shown to statistically decrease the incidence of neural tube defects.

This time last year I only had a vague idea of what spina bifida was, and was pretty much limited to checking babies backs in their assessment and someone I met during my clinical placement, who was living in her own home with 3 kids and needed help to get around. Well that has changed and I hope that it has changed for many people that Nickolas and I have had contact with. My hope is that spina bifida will become a household name similar to other (and less common) birth defects such as Downs Syndrome and Cystic Fibrosis.

Yes spina bifida is the most common birth defect in North America (about 1 in 1000 births) and that does not even consider those babies that are terminated. But spina bifida is not very well known among the general public - think about your first thoughts about spina bifida.

So I'm going to take this month as an excuse to try to make spina bifida a household name. The main focus of the month is going to be preparing for my Spirit Wheel Walk Run, June 19. This is an event that was created by the Spina Bifida and Hydrocephalus Association of Ontario, but that is actually run by individual families. My event is a walk along the Pickering Lakeshore for 3 hours with Nickolas' Loved Ones - our family and friends.
To prepare I have talked to family and friends, made up a personal pamphlet with information as well as a poster that I posted at work (and apparently was not clear that it was about me and Nickolas). But here is the final stretch. Not only to do I want to raise funds, I want to create awareness. I want to shout from the rooftops - My Son has Spina Bifida and it is only One Aspect of Who He Is. He is a wonderful, happy child who will have difficulties in life (yes everyone does). He is what Spina Bifida Looks Like.

Education and awareness is my goal for this month. I'm hoping to put some educational material on here this month - as well as my up-to-date, what-is-going-ons. I've moved this to it's own blog at http://www.aboutspinabifida.blogspot.com/ which is also a link on the side of this page.

I'm going to try to post the pamphlet I made up - it's a pdf file. And of course all my wonderful pics of my cutie-pies!