Whispers

whisper, whisper, whisper

I can hear you. Did you know that?

Spina bifida.... vitamins....

Did you look at me? Judge me? Blame me?
Did Nick hear? No, he didn't hear this time. But what about when he does. Will he look at me and blame me for being born with spina bifida?

I've written about folic acid before and folic acid awareness. Yes it is a vitamin, B9, it is in all kinds of foods and women's vitamins and in prenatal vitamins. Yes is has been shown to help to prevent neurotube defects (1 in 1300). Unlike what some Internet searches say (and we all know that the Internet doesn't lie) neurotube defects, like spina bifida, are not 100% preventable.


whisper, whisper, whisper

I am not to blame. Nick is not to blame.
Sometimes things just happen. Believe me, I know how hard it is to recognize that some things you have no control over, no rhyme or reason. I know how it feels better to be able to identify and point and say "ah, that is how it happened".

I have given up looking for answers, and concentrate on our lives.
But sometimes I still hear the whispers.

It reminds me of the a show I was watching about a boy who was born with no foot, or a damaged foot. In the interview where he talked about what happened he described it as "my mothers umbilical cord wrapped itself around my foot and cut off the circulation".
What if Nick sits in a similar interview and says "my mother didn't have enough folic acid and so I was born with spina bifida" I think it would break my heart.


I'm not sure what to do about the whispers. Learn to live with them I guess.
I'm sure I'm just extra sensitive leading up to Nick's surgery.

Spina Bifida and Hydrocephalus Awareness: Week 2

To continue with the week I was looking for more interesting topics, and of course those with pictures as well.
I didn't start off with a massive organized plan where everything would flow together and it would provide you with a progressive picture of what spina bifida looks like. I knew I wanted to have something new every day, and a lot of the time I just came up with the topic that day or the day before.

Day 10 came from a friend at work who asked if I had seen this guy on Nitro (that does bike stunts and stuff). That of course gave me a great idea for a topic that day.

Spina Bifida and Hydrocephalus Awareness: Day 10
 Extreme sports. Those of us in the spina bifida community all know Aaron Fotheringham and what he does on his wheelchair.

 

 There are even some very brave mothers who have one of these wheelchairs (and helmets) for their kids. I'm not this brave yet, but it's nice to know that if Nick wants to start sending his chair down ramps to do double backflips, he can. Or at least keep trying, keep falling and keep getting back up.

 There are so many videos out there. These are some of my favorites (check out at least 1)

https://www.youtube.com/watch?v=jCgUOFHXBOw
https://www.youtube.com/watch?v=AUUVfPy0UgI
https://www.youtube.com/watch?v=z43PXkvVC5c

 And there are a ton of pictures too

http://www.aaronfotheringham.com has a ton of stuff on it too!

 After posting this, I was showing Nick videos of some of the stunts. He was really impressed, but I kept showing him videos where Aaron wiped out, and he got bored before we got to the one that he made the jump.

Spina Bifida and Hydrocephalus Awareness: Day 11

 Every child born with spina bifida and hydrocephalus have scars. There is no choice, no alternative, no non-invasive, non-scarring treatment.

 

A scar is a sign of strength. It is a permanent mark for everyone to see that shows that you and your body fought, overcame and healed. Even if the scar was created when you were less than 24 hours old. And involved major surgery.

 Nick has 3 scars, the large scar on his back, the semi-circle scar on his temple and the small scar on his belly. The first is from his myelomeningocele repair, where the created a skin flap to help to cover the 3cm, oval lesion (hole) that was on his back. Plastic surgeon and the Neurosurgeon were both involved in that surgery, and it is a beautiful scar. It is large than other ones I’ve seen and looks like a ‘N’ that starts at his hip. The first line of the ‘N’ got infected and looks different from the other parts.
 

Nick had a big dressing on his back, with home care involvement for 6 weeks. But other than the initial infection it healed beautifully. The other 2 scars are from his shunt. The one above his temple is where the shunt is placed, and the one on his belly is where the shunt tubing ends. The head one is covered by his hair usually (though it did get A LOT of looks when he was a baby), and the belly one is coarse. I mean that you can see the suture needles holes, and it is right front-and-centre belly, it is about 3cm in length.
 With one more surgery on the horizon, I’m not sure if we will be adding another scar to Nickolas. But all of his scars mean strength. They are beautiful; they are part of who he is.

 

 

Spina Bifida and Hydrocephalus Awareness: Day 12
Spina bifida involves a number of different therapies and a team of therapists. We have a physiotherapist (PT), occupational therapist (OT) and speech therapist (ST). Nickolas has needed help from all of these so far, and has done multiple therapy block (8-12 weeks of one hour every week, followed by 8-12 weeks without therapy).

We have also sought out other therapies as well, free opportunities, private physiotherapy and conductive education (which I will discuss Day 13). Nickolas spent years HATING therapy. He would cry and scream and not want to work and do anything, and I would spend a lot of those sessions making him continue to work even with his crying and screaming. He did work, he just didn’t like it.

About 2 years something changed and while he might not LOVE therapy, he doesn’t hate it either.

Physiotherapy involves working with the large muscles to move. Walking, standing, kicking, going up and down stairs, moving are all goes that we have. Doing the big things. And a lot of core strength, because with the core will come everything else.

 

Occupational therapy involves working with the finer motor skills with activities of daily living. This includes feeding (which we haven’t had any problems with) but using your hands and fingers. You might  not think that spina bifida, that effects lower legs would also effect that hands, but it does. It has to do with the tone of the muscles. So it took therapy to strengthen Nick’s hands and fingers. We didn’t use OT as much when Nick was little, but now that he is in school, they are the go-to people to help him within the school. And when we look at making the house more accessible, they are also on our call-list.

 

The therapists together help with the walker, what will work for him. Allow Nick to move around, OT helps with the wheelchair and other seating issues if we need it.

 

But therapy is more than just a bunch of therapists and exercises to do. It is looking at everything we do during the day and try to figure out how to make it into therapy. Some days it feels like all you do it therapy, and other days it feels like you don’t do enough. But Nick keeps working and keeps moving towards maximizing his abilities every day

Spina Bifida and Hydrocephalus Awareness: Day 13

Having a child with special needs means always looking for create ways to maximize your child’s potential, to push that extra bit… because you know that they CAN. And acting as your child’s advocate.
Having a child who hates therapy made it very hard to help Nick to realize that we were asking him to try to do something that he can do. I heard about something called Conductive Education and wanted to try it.

 

 March of Dimes in Toronto offers Conductive Education. I love it! And Nick really enjoys it, and get SO MUCH out of it. What they do is use a holistic perspective to look at how to help Nickolas identify what he can do and how he can do it, all with an educational twist. And lots of songs.

 

 

There is no “he can’t do that” it is about “lets see how he can make this happen”, or “lets see how his body identified this feeling”. And always challenging. Every day involved working through a story or a theme, and then taking that theme and applying it to work.

 

http://www.marchofdimes.ca/EN/programs/CE/Pages/ConductiveEducation.aspx

Spina Bifida and Hydrocephalus Awareness: Day 14

Nerve damage, I have mentioned that the myelomeningocele lesion causes nerve damage. But what does that actually mean? What do nerves really do?
  

Well, they do all kinds of things. They tell your brain what you are feeling, and lets your brain tell your muscles what to do. With spina bifida, because the damage occurred during development some nerves work really well, some don’t work that well, and some don’t work at all. It isn’t like a spinal cord injury where you can point to a spot and say… from that point down. The vertebrae in the spine are associated with specific nerves that go to specific parts of the body. The vertebrae, from the head down are: Cervical C1-8, Thoracic T1-12, Lumbar L1-5, Sacral S1-5.

 

You can have a stronger and a weaker side, you can have some feeling in a part you don’t have muscle control over. Dermatome is the area of sensation, and the nerves supply from the front of the leg, to the bottom of the foot and up the back of the leg. Nickolas has sensation around S1; so he can feel down both front of his legs, decreased at the bottom of his foot and up his calf, and nothing the back of his thigh.

Myotome is the muscles that are controlled by the nerves. Different groups of muscles get information from multiple nerves. But when therapists are looking at function, it isn’t just if a specific muscle can move, but can it move against gravity or against a force. There is still some debate regarding what muscles Nick is able to use. Most likely somewhere in the L4 range.

 

You learn very early on what you letter and number combination is, and it takes some time to realize that it doesn’t really matter.

Spina Bifida and Hydrocephalus Awareness: Day 15

When you get the spina bifida diagnosis and meet with all of the doctors, there are lots of questions about walking. And they give you this chart, with the level of spina bifida and what your child will be estimated to use to be able to walk, assisted or unassisted.

I remember studying this chart and looking at where the dreaded wheelchair comes in. The wheelchair is no longer dreaded, and Nick is doing great with his walker and canes for the day. This chart is used very commonly when the baby is young or not born yet, it is a prognosis. It is not written in stone, and by the time your child reaches the ages to need different walking aids you spend more time looking at him (or her) that you do studying a chart. But for new parents who are thinking of what the future holds, this chart gives a tentative prognosis.

 

 

Spina Bifida and Hydrocephalus Awareness: Day 16

Folic Acid. I’m going to talk about folic acid because it is important, it is a vitamin that can help to decrease the chance of a neural tube defect (including spina bifida).

It is recommended for every woman to be taking at least 0.4-1 mg folic acid supplement for at least 2-3 months before getting pregnant, and to continue through the pregnancy. Any woman who is high risk (including a family member who was born with spina bifida) should take between 4-5 mg folic acid at least 3 months prior to pregnancy and through the pregnancy.

 

Folic Acid is a B vitamin (B9). Found in leafy green vegetables, fruits, enriched breads and cereals as well as dried beans, peas and nuts. Folic acid fortified flour and grains has been introduced in Canada. Prenatal supplementation and diet fortification have contributed to the current incidence of spina bifida 1 in 1300.

 

Folic acid is a tricky topic for us SB moms, many of us (myself included) were taking the recommended dose (of someone not high risk) prior to getting pregnant. And yet our children were still born with spina bifida. Folic acid, helps to reduce the risk … it doesn’t 100% prevent. So playing a blame game, like asking “why didn’t you take folic acid” is not helpful. If we were taking folic acid then it’s like we should have known to take the mega dose, and if you weren’t taking folic acid then you feel that it is your fault. It isn’t. Period.

Folic acid is great in that it has been identified as decreasing the incidence of spina bifida, but not completely preventing it. Because spina bifida and folic acid are linked the spina bifida associations run ads to promote folic acid awareness. It is kind of a kick in the face for us SB moms, but is important to educate the general public

http://www.riddingfamily.blogspot.ca/search/label/folic%20acid%20awareness

 

So that was week 2!

The thing about folic acid awareness...

Folic acid. You know, the thing you are supposed to take when you are trying to become pregnant so prevent some horrible birth defect.
 
That is what used to come to mind when I heard about folic acid. And the new campaign by the SBHAO (our organisations) help to educate the public with their educational posters.
"Every healthy baby is a victory.... 1 in 1300 babies are born with a neural tube defect" Is the Ontario slogan.

That slogan makes me a little sick to my stomach. In fact it makes me down right nauseous when I know that it comes from my own organisation. You know the one who is supposed to show what spina bifida looks like, the organization that is supposed to support the parents and educate the public. The organization that I work so hard fundraising for with calender sales and the SWWR walk.
Jill has already discussed it. But if every child is a victory - except of course my child. My glaringly 1 child, in 1300 victorious children!

Other folic acid ads are the same. Take this or suffer the consequences!!
Except of course for those of us taking folic acid when we got pregnant (Misty touched on this). Lots of us moms (lots and lots) took folic acid and our kids still had spina bifida. So wait a second? Folic acid doesn't make us victorious? Folic acid isn't the end all, cure all?

Folic acid is part of the picture. But so is environment, so is genetics, so is other unknown aspects of our lives. And sometimes it is just part of the plan. I am not against folic acid, I know how important it is, and I make sure that all of my child bearing family know to take the super dose of folic acid - my sister, Kyle's sister in law, and my brothers fiance. And of course myself.

I have been really lucky that I haven't heard the "didn't you take folic acid" question. Never.
I was very vocal that I was still breastfeeding and taking prenatals when Nick was conceived. And continued them when we got our positive test (at 4 weeks). So at that 8 week mark (you know the one) I was fully folic acid-ed up!

In fact, when I was first telling people spina bifida, I explained it by saying "you know the thing that folic acid is supposed to prevent? It doesn't always, and that is what Nick will be born with"

Folic acid is like sunscreen, like condoms, like seat belts. Yes it helps to prevent, but not all the time. So when you hear that someone got cancer or pregnant or hurt in an accident do you automatically think they were to blame?! Or that they were not doing everything they could do for their own health?
Because 1 in 1300 is  still 99.923077 percent effective.
Are condoms that effective? Birth control? Can you think of something that is more than 99.9% effective?!

Folic acid is quite effective, the rates have decreased over the years (from 1 in 1000). But spina bifida and other neural tube defects (when something happens during that pivotal 8 weeks mark of the developing spine and brain 'neural tube') are generally an unknown cause. Something about genetics and environment, diet and unknown factors.

This year's folic acid slogan reminds me of the advertising head thump that occurred this week with the Toronto Argo's (football). "Home is where the heart is, it is also where we hurt people". Oops!

So that is my little spiel about folic acid. And maybe a plea to the SBHAO to rethink their slogans about folic acid, with a little more tact to parents who know that they were apparently left grievously wounded on the field of battle. While 1300 other children stand victorious.

Spina Bifida Awareness

I am all for spina bifida awareness. I think there should be more of it, I welcome more of it.
I saw a recent post on facebook about a series of ads the SBA (Spina Bifida Association) is playing in Times Square. I though Perfect! Lets take a look at it!
I was excited that some public awareness was finally going to happen - then I saw the ad.
Folic Acid Awareness.

The ad was all about the importance of taking folic acid so your kid doesn't end up like mine! That is how it makes me feel!!! Did they show any kids with spina bifida? Did they try to straighten up some common misconceptions about spina bifida? NO!

Their "spina bifida awareness" campaign was all about preventing spina bifida (and you can't prevent it 100% - me, and alot of the other moms were taking folic acid) Folic acid statistically decreases the chances of having a neural tube defect, but there is no one cause of spina bifida.

You can view the ads here. Give your baby a healthy start and Give your children a gift today .
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.6150369/k.5F15/SBA_Times_Square_PSAs.htm

This is what they say:

Give your baby a healthy start

Spina bifida is the more common permanently disabling birth defect in the US

8 babies are born with spina bifida or a similar defect every day

take a multivitamin with folic acid daily before pregnancy to give your baby a healthy start

Give your future son or daughter a gift today

Take a multivitamin with folic acid daily before pregnancy to help prevent birth defects like Spina Bifida

Their future depends on what you do with the present

Thanks for that. Those ads just make me so aware of what spina bifida is. It doesn't blame the mother at all!