A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, February 10, 2011

Spina Bifida in the News

Spina bifida is on the lips of many newscasters across the US and Canada. I was excited and taped one of the news reports (and accidentally slept through the other - oops). Reporting on the results of the MOMS research study done in the United States.
It is also all over our blogging world as well. Many of the moms I follow participated in the MOMS study.

The result of the MOMS study is complete and published. This is a study that was done in the States. It compares doing surgery to repair the back either before or after the baby was born. Prenatal versus postnatal surgery.
I did look into the surgery when I was pregnant with Nickolas. This was a research study, where parents who were eligible were randomly assigned to the prenatal or postnatal surgery group. The prenatal surgery group had surgery at (I think 24-26 weeks), while the baby was in the uterus! It really blows my mind.
Closing the back in a teeny, tiny 24 week fetus. Then closing mom back up and continuing with the pregnancy.
It is actually during this surgery that this photo came from.

The other group is the postnatal group. These moms (who were randomly assigned) had the initial testing for the group and then returned at 38 weeks for a scheduled c-section - just like Nickolas.

So I went into watching these news articles knowing the study was completed early (apparently ignoring the fact that it ran twice as long as anticipated). AND that it was declared a complete success and now fetal surgery is being offered separate from the trial.
Amazing. But at the same time a little saddening.

Saddening because all of this news, all of this excitement about the surgery, isn't going to help Nickolas. Isn't going to help any of the kids that are born. But I think that is just me being a little self-absorbed. This is GREAT for future parents who get a diagnosis. I wonder what it will do to doctors who recommend termination for a fetus that could have surgery?

That being said, this surgery IS NOT A CURE. It is never meant to be a cure. It was meant to see the impact on the various complications from spina bifida. Specifically hydrocephalus, and chiari malformation.

Then why does many of the news reports discuss how spina bifida causes walking difficulties, brain damage and mental disability.

Wait a sec. Back that up!
So this is how the post surgical group is portrayed? Can't walk, brain damaged and having mental problems. What is this horrible thing called spina bifida?
I think that this kind of portrayal is negative,  perhaps we don't want spina bifida in the news - at least not like this.
I suppose (gruginly) that chiari and hydrocephalus could be considered brain damage - but that is certainly not how I see it.

The Canadian News was much more gentle. CTV news reported:

I did think about the surgery when I was pregnant. One part of me wishes that we could have participated. Hey what mom wouldn't wish we had participated when it has been a great success. That being said I was not going to be able to leave work and Katheryn for the 15 weeks I'd have to live in the States, or the money to do so.

As well I didn't even qualify. For one I wasn't a US resident, but even if I was, I had a previous c-section which automatically disqualified us. As well, Nickolas did not have hydrocephalus before he was born (which I had thought was needed - but looking at the research wasn't needed). That is what I keep telling myself. But I know we did the right decision, just sometimes, in the middle of the night that thought 'did you do everything humanly possible' creeps in. My rational mind knows that yes I did.

Because this is my blog I thought I'd just write my thoughts upon reading the research myself. I think it might be a little dry - so feel free to just skip to the Comments section.

Looking at the results (and coming from the perspective of a L&D nurse) I can't help noticing the impact on the uterus. 1/3 of the women had a weak scar from their surgery - and 8 women had their uterine dehiscence (or start to come apart). It gives me shivers just thinking about it.
So it is not risk free. This affects this mother, this pregnancy and subsequent pregnancies with multiple scars on the uterus. It is not something to take lightly (Not that ANY of the women who participated took this surgery lightly).
As well from the L&D eye: premature labour, premature water breaking were significant. Not only are these kids going to be born with spina bifida, but also risks of being premature.

How premature? 13% were born under 30 weeks. Under 30 weeks! Preemie-premature. 33% were born under 34 weeks (before lungs are mature). Another 33% were at the later premature phase and only 16% were term. Compared to 85% of post-surgery babies who were term.
In the scheme of things I guess prematurity can be outgrown and nerve damage can't. But I've never had a premature baby.

So, those are the risks.

But what does surgery get you?

The need for a shunt was decreased (but not eliminated). Only 65% of the prenatal group met the criteria for a shunt placement - and only 40% had a shunt placed. (Not quite sure why there is a difference between needing a shunt and getting one - but maybe I'm not reading it right).
The postnatal group (like the general SB community - I think) had 92% had criteria and 82% had a shunt placed.
The Chiari - 96% postnatal group had Chiari malformation (again typical). But only 64% in the prenatal group! And these babies were more likely to be mild. The Chiari still worries me, but Nick's chiari is not symptomatic. The introduction of the article, which talks about herniation of the hindbrain  - scary! Does not mention that this is often not symptomatic. I think leading to the media discussing brain damage and mental deficiency.

The second primary outcome does say that the mental development index and functional level (not sure why mental and motor was clumped together) was significantly better in the prenatal surgery group. Looking at the actual numbers of the mental development index - there wasn't a significant difference between the 2 groups.
About the functional level - yes there was a difference. 32% of the kids who had prenatal surgery functioned at 2 or more levels higher! I'm amazed. As well as more likely to not use assistance to walk.
NO difference in cognitive scores.

One final note. The discussion part of the article says that the surgery decreased the risk of death. I'm not quite sure where they got this. There were 4 perinatal (before brith) deaths, and 2 preshunt deaths (in the prenatal surgery). So I'm confused about how surgery decreases the risk of death. It also mentions the improved mental function scores. From what I read I don't know how they came to these 2 conclusions. But I know that I am sensitive to the possibility that spina bifida and hydrocephalus (with chiari thrown in for fun) can cause Nick to have a mental disability.

I do not mean to be negative about the article or in any way about the women and children who participated. I can only imagine how brave it is to be part of an experimental study where your child and yourself is put at risk (and/or benefit). It is a great thing for those who participated and those who planned and wrote about the study. It is an excellent study that opens to door to so many new possibilities. But I've studies so many research papers during my nursing school years, and I guess my mind still critically analyzes these papers.
Apparently I'm long winded today, and I thank you if you actually completed my whole 'review' of the study.
I promise tomorrow I'll have some long-awaited updates on Nickolas, and hopefully some pictures! I have a couple of half completed posts to spruce up!


  1. I'm obsessed with this. I don't know why it's even consuming me so much. I am still working through my thoughts. So amazing. So... I don't even know what! Incomplete? I guess we wait and see ;)

  2. It was incredibly hard decision to participate in the trial. It could have easily gone bad, and I am so grateful it didn't. Ruth was our last child, so the uterus impact wasn't a concern for me, but had it been my first child - definitely! I am glad the results were positive (of course!) - but it is still not the right choice for every family, and is still VERY RISKY. I still think about those days right after the surgery where I could have lost Ruth. I hope this spurs more research in how to help those already living with spina bifida.

  3. I agree with you. I wasn't terribly crazy about the way some things were worded. I think the study is amazing but I think it's important to realize that it is no guarantee.

  4. I felt the same way about the wording... bleh. I was offered the trial and we declined. We knew we might loose her if we participated, and it just wasn't worth it to us. I'm thankful the results are positive, but I'm also thankful we didn't participate :).

  5. You did a great job of sharing your feelings without offending :)

    I did the surgery.... BEFORE it was the study :) Talk about crazy...we were number FIVE! :) BUT I was CONFIDENT that this was the path God put us on and that is why we were at peace doing it.

    The one thing I wanted to coment on that you said was the death prevention. I TRULEY believe that being able to offer expecting parents a choice of surgery will greatly decrease the number of terminations, therefore allowing more of these preciouse children to live. Even if the expecting parents don't choose surgery, it would (I think) be much harder to justify termination... For 10+ years I have prayed for something that would let more of these children live, and I think this is a huge step in the right direction :)

    Thank you for sharing your thoughts and heart on this touchy subject.