I made these 'learning posts' in June for Spina Bifida Awareness month, but thought I'd make a stand-alone blog so that if anyone is interested, all of the information is here. And I can add as I learn more about spina bifida as well!

Spina Bifida is the most common birth defect in North America. My son Nickolas was born November 13, 2009 with spina bifida and I have chronicalled our journey here, in my personal blog.

I hope you enjoy and learn something!

The information from this blog has been collected by myself to share what I have learned. It should in no way replace medical recommendations or consultation. This is for educational and information purposes only.

Start by picking a topic below:

Tuesday, June 5, 2012

Prenatal surgery - MOMS study

Prenatal surgery is now an option for mothers who receive the diagnosis of spina bifida inutero.

Traditionally infants who have a myelomeningocele has the defect (hole) closed in the first 24-48 hours after birth. There was a recent clinical trial who looked at the difference between doing a closure surgery at birth versus before birth. The idea behind this was that prolonged exposure of the spinal nerves to amniotic fluid could impact the damage to the nerves, and so by doing surgery at 24 weeks gestation, the nerves were less damaged as well as a positive impact on hydrocephalus and chairi II malformation.

The MOMS study was a 8 year research study in the United States, and it finished in March 2011 with positive results.  Results of the study was published in March 2011 and it was covered in various news media.


The entire article can be reviewed as published in the New England Journal of Medicine.
Adzick et al. (2011). A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele. N Engl J Med 2011; 364:993-1004

The Fetal Treatment Center is a great resource for anyone who is interested in fetal surgery. They have significant information and pamphlets and state that they are the birthplace of fetal surgery. There is also a booklet on this prenatal surgery that can be viewed online - with the understanding that the information is to put a positive spin on fetal surgery.
With the conclusion of the research and recognition of a positive outcome for children this fetal surgery has more widespread availability. Currently, in Canada, there is not a hospital that has been doing this fetal surgery, but it should be coming to Canada (?Toronto or Vancouver) within the year. That being said OHIP (Ontario Health Insurance Plan) has set a precedent and approved a mother to go to the US to have this surgery.
The surgery is made similar to a Cesarean section (but with mother asleep). There is an incision in the abdomen and uterus of the mother (like in a Cesarean section), But the baby is not removed. The baby is moved so that the back is exposed to the surgeons and it is repaired and closed up by the pediatric neurosurgeon (the same way surgery would be done after birth). Then the uterus and abdomen is closed and mother recovers.

Recovery after prenatal surgery involves rest for mother and monitoring for baby. According to UCSF and the Fetal Treatment Center, the mother would remain in hospital for 4-5 days.
There are blogs that are available to read and follow that review what it was like to have prenatal surgery during the MOMS trial. Anyone who is considering participating in prenatal surgery should read from others who have gone through the surgery.

These are just a few that I have followed.

Benefits of fetal surgery go beyond nerve damage.
What came out of the MOMS study was mostly the impact on hydrocephalus and chiari malformation as shown by a decreased need for a shunt for hydrocephalus.
Hydrocephalus is the result of the chairi malformation, where the back of the brain is being pulled down which blocks the flow of spina fluid. Results from the prenatal surgery found that repairing the back actually improved the chiari malformation with the brain moving back into the normal position, which in turn improves the hydrocephalus.
THIS is the positive benefit as demonstrated by the MOMS study.

Prenatal surgery has documented positives, but there are also a number a negatives that should be considered by anyone who has received a prenatal diagnosis of spina bifida (before 24 weeks) and are interested in prenatal surgery.

I did not pursue prenatal surgery when I was pregnant with Nickolas. During my pregnancy the MOMS trial was still in a trial stage and I was not eligible by living in Canada (among other reasons).
When the research was released in 2011 I did a review about my feeling about the research trial and risk versus benefit on my personal blog. http://www.riddingfamily.blogspot.ca/2011/02/spina-bifida-in-news.html

Spina bifida is one of the only non-terminal indications for prenatal surgery. And it 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.
This is my review on the research that came out of the MOMS research trial: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 (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).

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!  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.

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! It does not mention that this is often not symptomatic. .

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 birth) 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.


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  2. I and my daughter suffers from spina bifida. We are living in Turkey.
    We also have problems in orthopedic and urologic.
    I wish you all heathful. We also have a forum on our website.

  3. I read an article about Prenatal surgery from Vanderbilt University where they discuss the results and what happened to those individuals that participated. Overall it looked like they achieved some positive results...


  4. im Beth from Toronto i am 31 weeks and i underwent fetal surgery at CHOP on june 11 2013 im one of the first in canada but did travel to the USA im so happy i had this done its has given me hope for my baby girl painful it was but i wouldnt change a thing i hope that canada will soon offer this so more moms and dads have this chance i did

  5. I have read and like all the comments. I have Spina Bifida and also have a Face Book Page called, Everyone Being Aware of Spina Bifida. It is a closed page, please go to Face Book & type the title in the search bar. It (the page /site) will come up, please request to join.

  6. One SB mom says that ninety five percent of SB kids have unsymptomatic Chiari II. I hope that Daniel is one of those kids. To be honest I'm not as concerned about his ability to walk as I'd rather he didn't have to deal with breathing issues.


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