Showing posts with label folic acid. Show all posts
Showing posts with label folic acid. Show all posts

Thursday, March 8, 2012

The Next Study

There is a study happening right now and they are recruiting 2000 women with children who have SB and 1000 women with children that do not have SB. It's very easy to participate: complete a short online survey and then they will mail you a kit to complete a saliva sample. They are looking at possible genetic factors that cause SB. I don't know what the non-SB survey involves, but the SB one has the usual questions about height and weight when you got pregnant, ethnicity, folic acid (shocker, eh?), and a few other simple things like that. It's pretty painless and nothing we haven't been asked 100 times before.

Click here to participate: http://sbgenetics.org/sbgenetics/enrollment.html

I get so torn up over studies on SB-related things. Similar to the feelings I had after the prenatal study, I can't help regretting that, for us, it's too late. If they do find a genetic indicator, it won't help Kingsley. If they find anything related to cause, it won't help Kingsley. It's a done deal. That makes me frustrated and sad.

I remind myself though, that this is so vital not for me, not for Kingsley now, but for his future family, for Rachel and Cordelia and my two sweet nieces. If there is a genetic cause, I need to know for them. They need to know if they're carrying something, they need to know what they can do to prevent a NTD if/when they decide to have children. Kingsley is the first person in either of our families to ever have a NTD that we're aware of, but Jeff and I both have cousins starting families - what if there is a genetic link that extends to them? What if, what if, what if. We need answers. Folic acid is a big part of the equation, but it doesn't answer our big WHY.

So, if you can, click that link and participate. Spread it around and keep it going until they reach their quota.





Saturday, October 1, 2011

Awareness Month Deja Vu

Hello, welcome to October! Otherwise known as Spina Bifida Awareness month for the USA. We live in Canada and ours is in June, so I posted about it then. Instead of repeating, I'm going to repost. You can say that is lazy or you can say that I was so brilliant the first time that there is no topping it. ;)

I'll pretend you're agreeing with the second option.

I like to let people know what living with SB is really like. Not just the bad stuff, not just the good stuff. I don't want to gloss over anything because it's ugly and I also don't want to make it seem like it's horrible because mostly things are just pretty awesome.

Things weren't always so awesome though. Here is what it feels like to get the diagnosis for your baby: http://thelittlekingsley.blogspot.com/2009/09/diagnosis.html  In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine! http://thelittlekingsley.blogspot.com/2010/01/hes-here.html


The rainbows fade with the lovely drugs, unfortunately. The post-birth hospital stay is one long rollercoaster, but the end is worth it because you get to go home and start your life. http://thelittlekingsley.blogspot.com/2010/02/kingsleys-video.html

And then you live.

You have good days http://thelittlekingsley.blogspot.com/2010/06/rockstar.html  and bad days http://thelittlekingsley.blogspot.com/2010/06/stop-ride.html and sometimes even worse days http://thelittlekingsley.blogspot.com/2010/09/heavy.html


You go on vacation (imagine that!) http://thelittlekingsley.blogspot.com/2010/06/kingsleys-first-vaca.html Yikes http://thelittlekingsley.blogspot.com/2010/08/three-kids-three-days.html 

You live http://thelittlekingsley.blogspot.com/2010/10/living.html


Your other children continue to live http://thelittlekingsley.blogspot.com/2010/10/spidipida.html


You have blips http://thelittlekingsley.blogspot.com/2010/12/kingsleys-decompression-with-music.html

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours http://thelittlekingsley.blogspot.com/2011/05/best-case-scenario.html


This is what it's really like to live with a child with SB http://thelittlekingsley.blogspot.com/2011/06/living-part-2.html






Friday, June 24, 2011

Awareness

Awareness is a funny thing, isn't it? June is Spina Bifida Awareness month and I've been thinking lately about what that means. What is it that the general public needs to be aware of? The various international spina bifida associations have inspired some recent discussion on this topic as they seem to want to focus on two things: prevention and support. First, prevention. Second, support.


I understand this, truly. Prevention comes first on the timeline, right? Sure. As such, the vast majority of ad campaigns for SB awareness involve folic acid.  Folic acid has been proven to effectively reduce the likelihood of having a baby with SB. My mom told me once that when she was working in the SB world back in the 80's (she was a PT for the SB clinic Kingsley now attends), that every year there were about 12 kids with SB born, 16 on a really busy year. In 2009, there were 4. Kingsley was the only one as far as I know in 2010. This year there are another handful that I've heard rumors or know of (one born on Monday so send out some prayers for that little sweetheart and her family!). Between my mom's time in the SB world and mine two things happened: folic acid and prenatal diagnosis.  I would like to say that it's all folic acid that is the reason for this drop in stats, but we all know that's not true. I have yet to meet a parent of a child with SB that didn't get the extremely pushy Termination Talk at diagnosis.


I know that I am overly sensitive because I have a child with SB, but the prevention campaigns sting.

Take, for example, this one for my very own SB&HAO this month. "Every healthy baby is a victory" is the slogan. At first, you can think that it might possibly mean that the SB&HAO are going to be there to make sure that your baby with SB is going to be healthy and vital and have a fantastic life, right? Go team! However, then the poster continues with the message: "One in 1300 babies is born with spina bifida and hydrocephalus.  WE CAN CHANGE THAT... DONATE TODAY." I will optimistically assume that what they are intending to say is that every baby not born with SB is a victory for research and education about the causes and thus the ability to prevent it. The overt message is that folic acid can prevent SB (which it doesn't always), but the subtle message is that when that fails, take one for the team, Mama! Next time, you can have a victory!

And if "Every healthy baby is a victory," what does that make Kingsley? Apparently he's not a victory. He's not even healthy! It's no wonder OB's are heavy on terminating.


Awareness shouldn't be just about preventing. It should be about making the world aware of what SB is really like. What the diagnosis will really mean for your child. And most importantly, that our children, friends, parents, family members, coworkers, and neighbours with SB are healthy, wonderful people who are thriving and LIVING.


If you are reading this it's likely because you either have or have someone in your life with SB, or because you know me ;) I just need you to spread the word. Let people know about Kingsley or any of the other beautiful children out there with SB. Let them know that he is amazing and that we adore him and we would not want a life without him. He is my baby boy and he is a victory.


All that being said, I don't think anything gets my back up more than someone NOT taking folic acid for a planned pregnancy. If there is any remote chance that you (or your wife, girlfriend, etc) may get pregnant in the next few months, take folic acid. If your prenatal vitamins are making you sick, take a separate folic acid pill on it's own. You cannot get enough folic acid from your diet, no matter how healthy you are. It just doesn't happen unless your diet revolves around folic acid intake and it doesn't, does it?

In the 70's, it was acceptable to drink when you were pregnant, to smoke, and folic acid was not on anyone's radar. Healthy babies were still born, yes. In 2011, people who smoke and drink when pregnant are seen as gambling with their baby's health. Why isn't the same said about not taking folic acid? Just take it. It's not a guarantee, but believe me, the last thing you want to live with would be to be in my shoes and not know if you could've prevented it.


Edit: Misty also has some comments on folic acid that are worth a read http://www.mistyboyd.com/?p=141

Wednesday, March 2, 2011

What Not to Ask

My dearest friend emailed me after my last blog post to ask about what was and was not okay to ask a mom regarding her children.  Oh boy, where do I begin? ;)  No, I'm kidding. There are a lot of things that people say or ask that are just small talk and mean no harm by them and we all know that.  They are seemingly innocent questions, but if you stop and think about it, they are some pretty weird things for a perfect stranger to be asking. Whether it's someone you've never laid eyes on or someone you casually know, there are some things better left unasked. I'll also preface by saying that most of these things are just fine to ask someone you actually know and talk to on a regular basis or have known forever.  Except the last one.

As for the rest of the questions, let us back up a bit because we all know they start far before childhood.

1. When are you getting married?
If someone has been dating someone for a long time, try to resist the urge to ask when they will be getting married unless there is a ring on one of their fingers. Jeff and I dated for four years before we got engaged. I had to endure that question for the better part of three years. It got tedious. And these days, not everyone gets married or even wants to. If you are actually involved in these people's lives, try something more like, "Are you guys thinking of getting married?" where the implication is not that you should be running to the alter, but will essentially get you the information you're so eagerly trying to get at. If you are just making idle small talk, bite your tongue entirely.

2. When are you having kids?
In our wedding guest book no less than six people referenced the need to begin breeding immediately. I kid you not, people started staring at my abdomen the next day in hopes of being the first to declare that they just KNEW I was pregnant before I announced it. For us, we had no trouble conceiving and carrying children, but this is not always the case. It must sting something awful to be asked this and not have an answer.  Also, as I'm sure my sister-in-law would attest to, if you have no plans for children then this question would probably get annoying. As with most of these questions, this one is not one to throw down with someone you don't actually know in hopes of making small talk. You might get an earful. If you're at least on a first name basis, you could try: "Are you thinking about having kids? Do you guys want to have kids?"  Those with fertility issues are welcome to chime in and let me know if that's even okay.

3. Pregnancy Questions
The above question is often followed closely with the heavily loaded: "Are you pregnant/When are you due?"  I don't care if you're 9 months pregnant and in obvious labour, until I see that head crowning, I'm not going to ask until you say something. I've heard too many horror stories!  Once someone is pregnant, people love to comment on the belly size. You pretty much can't win here. Either the woman is a whale and doesn't need you to remind her, or she's small/not showing and possibly self-conscious about it. Just placate the poor preggo and use the handy lies: "You're glowing!" "Pregnancy looks great on you!" and my personal favourite: "You're all belly!" Even though I know you're lying, I appreciate the effort. ;) Oh, one more dangerous comment - it's around the time of her due date, don't say: "You haven't had that baby yet??" because the answer is either obviously NO and she might ram her swollen fist in your face and blame it on hormonal rage, or the answer is YES and she might ram her swollen fist in your face and blame it on hormonal rage. Hormones are not a friendly thing. Belly rubbing is also a risky thing to do. I don't mind, but I know other women who consider it a huge no-no and might reach out and rub your (non-preggo) belly in return.

My other least favourite pregnancy related thing to say is: "... as long as they're healthy," as in, "Doesn't matter if it's a boy or girl, as long as they're healthy, right?" Define 'healthy,' folks. This is doubly dangerous since it usually coincides with the anatomy scan where you find out the gender and/or the overall state of development, or in other words, this is when you'll be finding out if something is not going according to plan. I can't even count how many times people said this to me, people who I wasn't interested in sharing the news about King's diagnosis to. I know it's just one of those random things people say, but if you think about it, sometimes it doesn't even matter if they're 'healthy' (and for the record, Kingsley was very healthy when he was born. Just had a pesky hole in his back).

4. When are you having another one?
Same as above. This started when Rachel was about 7 days old. It could be because I was on a hormone high and probably was singing about having 10 children still. When the drugs fully wore off, I stopped that tune, but the question kept coming. Are you pregnant? Are you pregnant? Are you pregnant? Stop watching what I'm eating/drinking. When I want to tell you, I will tell you. Until then, zip it. Second children are sometimes hard to create, if they're desired at all. Not everyone HAS to have a bunch of kids. Luckily, this seems to die off once: 1. you have one child of each gender, 2. you have 3 children, as clearly you would be insane to keep having kids after 3. I'm told that when children are close in age, there is also the question: "Was that on purpose?" that comes up a lot. Apparently no sane person would have kids under 2 years apart, so it imperative that you tell everyone about your blunders with birth control. It is their business to know, after all.

5. Are you going to try for a boy/girl?
Yes, clearly my life would not be complete unless I had a child of each gender. That would be my sole reason for continuing to procreate. Damn all these pesky girls I keep producing... I just want a BOY!!  Yes, there are people that really do want a child of each/the other gender, but there's an implication that the second/third/fifteenth of the first gender is going to be sub-par because they are not the other kind and that's just ridiculous. For what it's worth, I would've been happy with 10 girls. Probably would've been praying that #11 was a girl if I had 10 boys though. ;)

6. Are you breastfeeding?
Why oh why do little old ladies love to ask this question? My answer is yes, but it's always a little bit awkward and I am often tempted to say no just to see what they would say. I'm also tempted to ask if they're eating enough fibre or something equally none of my business. Again, this can be one of those sensitive areas because many mothers want/try to breastfeed but for whatever reason they cannot/did not and really don't need to justify that to you.

7. Are you STILL breastfeeding?
This begins when they're about 4-6 months old, along with the averted eyes. Seems the little old ladies like you to breastfeed, but not THAT much.  It's right up there with, "Why don't you just feed them food?"  Now, to be fair, before I had Rachel I had absolutely zero idea how long you fed a baby or what you fed them. I recall thinking that I would breastfeed her until she was 6 months old and then switch to baby food. Har har. Turns out, you introduce baby food at about 6 months old (or 4-6 depending on the child and your preference), but you have to keep either formula or breastmilk as their main source of nutrition until over a year old. The World Health Organization recommends breastfeeding until 2 years old. Not everyone does this, but try not to make your shudder obvious if you see someone breastfeeding a toddler. It's okay. It's even good for them!

8. Is s/he a good baby?
Nope, she's a freakin NIGHTMARE! Spawn of Satan! Take this baby AWAY from me!!
Really, how is a mother supposed to respond to this?

9. The milestone questions
Is she sleeping through the night?  Is he sitting up?  Is she crawling/standing/cruising/walking/talking...?
These questions don't bother me. They are generally pretty safe small talk, so long as you are in the ballpark for when they usually happen. You may get an earful on the sleeping through the night thing, so if the mother is carrying an extra large caffeinated beverage, you can probably assume the answer is no and skip that one.  Most moms love the opportunity to brag about the wonderful things their children are doing, so any interest in the little ones abilities is usually okay. If you get a short 'no' response, then move on.

10. What's wrong with him?
Oh, where do I begin? The short answer: Nothing. The long answer: Nothing. We mothers are a wee bit sensitive when it comes to our kids. 'Wrong' implies that you can somehow make things 'right'. Nothing I do can change Kingsley, he was born this way. He is the way he is supposed to be, therefore, there is nothing wrong with him. If you're under the age of 12, I will easily ignore the implications of asking if something is wrong; if you're older than that, I would expect a little sensitivity when it comes to your choice in words. I don't know the correct way to ask what the deal is with a kid who has an obvious disability or diagnosis or whatever. The more specific questions like: "Why does he have that on his foot?" or "Why is he going to be in a wheelchair?" do not bother me in the slightest. I have seen other kids in AFO's/wheelchairs and have ached to ask (but I'm shy). I also had someone once ask, "What's Kingsley's story?" which was a good alternative, in my mind. I'm sure I'll get a lot more questions like this in the future, but for now, that's all I've heard.

11. Did you take folic acid?
You know I had to add this one! I'm sure there are equivalent ones for kids with other diagnoses that annoy other parents as well.  Really, it's a disguised way of asking: "Was this your fault and do you know that it was your fault?" If it is my fault that Kingsley has SB, I don't know it. But even if I did know what caused him to have an open NTD, it's irrelevant to any conversation I will likely ever have, other than with a shrink or a fertility doctor. If you are neither, do not ask this question.

So, there. That's my little list of loaded questions. Ask at your own risk. They won't apply to everyone, obviously, and if you find yourself asking one of them, don't sweat it, it's not actually that big of a deal. The funny thing is, I think mom's are probably most guilty of asking other women these things. I have heard the words: "When are you guys having ki..... crap." come out of my mouth more times than I can count. I don't know why I say it, it's like a compulsion. I inwardly groan every single time.

As for Kingsley-specific questions, I don't think I've ever been bothered by one coming from someone I know or who knows about his diagnosis (other than #11).  I have no problem talking about him or his diagnosis or what it means for him. Probably better to ask than assume.

Sunday, October 18, 2009

Where We're At

So... for an update. It's been confirmed and confirmed again. And then again. He does have myelomeningocele spina bifida. It's not going away, it wasn't a fluke ultrasound or blood test. I'm going to do my best now to explain what this all means for him and for us, since it's sort of a foreign thing for most people.

At about 24-28 days after conception (about the time the reality of pregnancy is setting in and you start wondering who to tell), the bones that make up the spinal column start to form. They are supposed to form a sort of tube with the spinal nerves all down the middle. What happens with SB (specifically the type our son has) is that the bones don't all form the tube. At some point, they just hang out in a straight line or arch instead of a triangle (which is a really bizarre thing to see on an u/s, let me tell you!). That leaves the nerves to stick out of the column. Then everything forms around the spinal canal, or in his case, doesn't form. He has a hole in his back where the spinal nerves are sticking out in a sort of sac. Because they are hanging out instead of tucked in all snug like they're supposed to, they get damaged by the amniotic fluid. The damage is not repairable and is permanent. And it happens pretty much right off the bat. Where the hole (or lesion, as they call it) is located makes a huge difference. It's like breaking your back. Where ever the 'break' is changes everything. This picture breaks it down with the different things that can be effected. http://www.spinalinjury.net/test2/as...cord_map02.jpg

Basically, where ever the lesion, everything listed below is a write off. So, lower = better.

Our son's lesion is either low lumbar or high sacral. Twice we've been told sacral only. We can go for an MRI, hope he lies still and not up against me too much and try and see exactly where. Or annoy the next u/s tech enough that they actually take the time to count vertebrae and find out for sure, but even knowing where isn't going to tell us much - the nerve damage can go up a bit higher than the lesion point. And the range of functioning is huge. As you can see in the picture, his bladder, bowel, and sexual functioning will be effected. The degree to which his legs are effected is what we don't know. Could be his feet, could be his ankles, calves, knees, quads... It's hard to face the unknown.

The other thing he has is something called Arnold Chiari Malformation 2 (ACII). It's a bit much to get unless you understand brain/brain stem anatomy, but essentially, the nerves hanging out his back pull his brain down the back of his head a bit. It makes for a wonky picture on the u/s that they call 'the fruit basket indicators'. He has a lemon shaped head, instead of a circle. This goes away by the time he's born, I'm told. This is what was flagged in our 20 week u/s as an abnormality, even though the tech couldn't see the lesion. The cerebellum is the part that is pulled down in the back, into a banana shape. The ACII likely won't cause many problems for him, it's pretty rare that it causes huge complications, it just is.

However, there is one more big complication he'll have. He'll likely (85%) develop hydrocephalus at some point. Normally, cerebrospinal fluid flows around the brain and spinal cord and then is reabsorbed into the blood stream. Currently, he has a hole in his back, so the fluid just comes out (which is how they screen you positive on the IPS - the fluid/protein in the amnio gets into mama's blood at unusually high rates. this is also how they know the type of SB, as myelomeningocele is the only type with a big ol' hole in the back). Hydrocephalus is when the body doesn't reabsorb the fluid and it just pools in ventricles in the brain, puts pressure on the skull/brain and gives you a big head. Left untreated, causes brain damage. Many SB babies develop hydrocephalus in utero. It's not as scary for babies to develop hydro as for, say, your or I bc their skulls aren't formed. There is less pressure on the brain, brain damage doesn't happen yet. BUT, better not to have it. Our son doesn't have it yet, his head and ventricles are completely normal. Yay! BUT (big but again)... once they close his back, the fluid will have nowhere to go and hydro will likely develop. If not before then.

Anyway, that big rambly leads me up to his birth. I was told that I'd have to have a c-section to reduce the chance of his sac getting damaged. However, my OB is now arguing this, saying I'm a prime candidate for a vaginal birth if she's ever seen one given that: his sac is small, his head is normal, this is my 3rd baby and the other two were both big headed chubbers. He'll likely be smaller than them, just because. But IF I go that route, I'd have to be induced. Which nearly defeats the purpose, in my opinion. And Jeff and I would have to be 100% convinced that we would never wonder 'what if' regarding the lesion/damage. And his neurosurgeon would have to agree. I'll likely have a c/s, but at least it'll feel like my choice, which helps for some reason.

So, the day he's born, he'll be taken immediately from me, either way, and they'll put stuff on him to protect his back, make sure he's stable and then he'll go for surgery. They'll open the sac, tuck his nerves back in, close the bones, dura, muscle, skin, etc over the hole and patch him up. He has to stay on his stomach and stay still for awhile after that. Then, they wait/watch for hydro. Sometime in the next week, he'll likely get a shunt put in. It's basically a pump/valve that will go into his head, into the ventricles and is attached to a long tube thing that goes into his abdomen. It drains the fluid from his head to his body where it'll be reabsorbed. It's there for life. And has risks of infection, malfunction, blah blah, big scary stuff, but saves his life. Then, after all that fun stuff, I will finally get to bring him home, about 10-ish days after he's born. And basically go into hibernation until spring!
There is an SB clinic at TVCC which includes our neuronurse (who is wonderful), PT, SW, urologist (bc of his bladder/bowel issues), and some other folk. Some get involved with me now, the rest later with him.

What terrifies us is the unknown. We know the details, we get what happens. But I have no idea how much he'll be effected, how his surgeries will go, how his health will be...

It also bothers me that I don't know why this happened. My OB did the whole Good Will Hunting 'It's not your fault' thing with me the other day, which I know, but of course I doubt bc that's what mama's do. She said folic acid only prevents about 75% of cases, and she believes it reduces the degree of SB in the rest, so not taking it would've been potentially worse. Why it happens at all though is a big fat unknown. My new least favorite word!
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