Spina Bifida And Pain

The one thing that I have had to deal with my entire life is pain. Back pain, leg pain, and headaches from the stress that comes with the pain. Physical therapy can help. Strengthening exercises, proper stretching, and warm up exercises do make me feel better, but the pain doesn’t really go away.

Massage therapy can bring about relaxation and it makes me less stressful. The main problem is the ability to afford it. Unless someone knows otherwise, my insurance definitely does not cover it.

The Spina Bifida Association has a document on pain. “As people with SB age, they often have pain associated with degenerative conditions that affect the spine, joints, or muscles (musculo skeletal pain). In SB, commonly seen conditions are: arthritis, osteoporosis, carpal tunnel syndrome, and tethered cord syndrome. Back pain is common in adults, and can be very debilitating.” Yes, yes, and yes.

Not only has the pain I experience increased, as I’ve gotten older I now have Spinal Stenosis. This demands that I be very careful in the way I move and twist my back. I do everything possible not to fall.

So how can we deal with pain?

My experiences have given me the following insights.

I don’t take pain personally.

I’ve seen many people with chronic pain become bitter. They may blame God or just start feeling hopeless. Don’t fall into this trap!

Do you want to pity yourself or do you want to effectively deal with your pain?

Pain is there for a reason. It tells us that something may be wrong, to stop doing what we’re doing, or keeps us from hurting ourselves. Pain in itself is neither good nor bad. It helps, but it also can hurt.

I use pain medication sparingly.

I noticed a long time ago that the effectiveness of pain medication decreases over time. This means either taking more and more medication or weaning ourselves away from the pain medications. As I get older I am more apprehensive about how medication affects my heart health. I read the warning labels and I become concerned.

If your taking pain medication, don’t stop based on my opinion. Talk to your physician.

I’m conscious and careful.

If I twist in certain ways, I hurt more. When I fall I may cause enough pain to have to go to the emergency room. If I’m on my feet too long I suffer for several days.

These are the times I take medication.

I focus on other things.

This is one of the key ways that I deal with pain. Keep busy doing something. Laying or sitting around with nothing to do is a big mistake.

Keep busy working, having fun with friends and family, pursuing a hobby, talking with people, exercising, reading, going to church activities, traveling, and just about anything else.

When you start thinking about your pain, refocus. Think about something else, anything else.

There is pain that stands up and kicks you every time you try to get up. Trust me, I know this kind of pain. Focusing on other things becomes totally impossible. For this kind of pain…

  • See a doctor
  • Reposition yourself
  • Get help from someone

This kind of pain needs treatment. Get help.

Spina Bifida Affects What We Can Do?

This story comes to you from the Real Stories collection of the Spina Bifida Association.

“I remember when the doctors told me my child had hydrocephalus and myelomeningocele and that he would not be able to do anything that another child would do. I was devastated to say the least!

Through the years, my son has proved them wrong time and time again by overcoming obstacles that having Spina Bifida can give. He spoke his first sentence at nine months old, he crawled on time, he used a wheelchair for the first time at 12 months old. My son is now an honor student in “regular” education classes and very active in wheelchair sports. He has many friends and excels in everything that he does.”

Spina Bifida Association, Real Stories

Disabled athlete Tatyana McFadden completes marathon grand slam [Radio]

 Disabled athlete Tatyana McFadden completes marathon grand slam [Radio]

Lesions, Levels, Sensory and Mobility

Lesions, Levels, Sensory and Mobility

It’s all about the letters and numbers.For those not in the spina bifida world there are actually 2 sets of numbers and letters to work with (actually maybe 4), which represent that lesion (where the spine was damaged) or level. One is motor ability and the other is sensory ability. Then there is actual level and functional level. Am I confusing you yet?
Some basics: The spine is made up of vertebrae (bones) that have letters and numbers. From the top down we have 8 cervical vertebrae (C1-C8), 12 thoracic vertebrae (T1-T12), 5 lumbar vertebrae (L1-L5) and 5 sacral (S1-S5).

 

 Lesions, Levels, Sensory and Mobility

The spinal cord and nerves are protected by the bony vertebrae. The nerves send messages back and forth to/from the body and brain.

Sensory lets your brain know what different parts of your body is feeling

Motor function lets you brain tell your body, muscles what to do.

The lesion means that the protecting bony part of the spine did not develop and the nerves are exposed and damaged. Unlike a spinal cord injury – where there is usually a clear line of function versus no-function, spina bifida can be patchy with lesion levels that might not equal functional level.

So what does it mean?

Sensory level is easy to determine, it just means what does someone actually feel.

Does an infant, child or adult feel when you touch? When you tickle?

dermatome Lesions, Levels, Sensory and Mobility

 

 You can see from both these pictures that it is not a straight line.

The nerves feed into different muscles and part of the body and it is different at the front and the back of the legs.

With Nickolas, I feel that he can feel down the front of his legs, and up the back of his calf, but nothing at the back of his thigh. So… that would give us about a S1 sensory level.

 Functional level is a little tricky.

Muscles get messages from different nerves – this is called innervation.

When I ask someone to give me a number and letter, they always tell me that it’s their best guess. And with infants and children, it will take time to determine. There is also no clear-cut answer.

When scientists all got together in a room and drew all of these charts they had to draw a line in the sand and say ‘this muscle = this vertebrae/nerve’

To get an idea of what I mean you can look at this medical illustration linked here.

500px 12 15 myotomes (Spinal illust G11100)+ +full Lesions, Levels, Sensory and Mobility

The Spinal Hub website outlines exactly what function spinal nerves do to muscles. Also a powerpoint presentation here.

Vertebrae
Muscle
Function
C1
C2
C3
Diaphragm
Breathing
C4
Diaphragm/ Shoulder
Breathing/Shoulder
shrug
C5
Deltoid/
Biceps
Lift
arms, sideways/Bend elbow
C6
Wrist extensors
Lift wrist back
C7
Triceps
Straighten
elbow
C8
Hands/Fingers
Grip object

 

Thoracic
T1
Hands/Fingers
Splay
fingers apart
T2
Chest (intercostal)
Allow ribcage
move/breathe
T3
Chest
(intercostal)
Allow
ribcage move/breathe
T4
Chest (intercostal)
Allow ribcage
move/breathe
T5
Chest
(intercostal)
Allow
ribcage move/breathe
T6
Chest/ Abdomen
Ribcage move/Cough
T7
Chest/
Abdomen
Ribcage
move/Cough
T8
Chest/ Abdomen
Ribcage move/Cough
T9
Abdomen
Cough,
balance
T10
Abdomen
Cough, balance
T11
Abdomen
Cough,
balance
T12
Abdomen
Cough, balance

 

Lumbar
L1
Hip
Bends
hips
L2
Hip
Bend, flex hip joint
L3
Quadricep/Hip
adductors
Straighten
leg at knee
L4
Knee/Ankle
Bend ankle, draw foot
back (dorsi-flexion)
L5
Ankle/Toe
Lift
ankle/Lift big toe

 

Sacral
S1
Ankle/Toe
Bend
ankle/Point toe (plantar flexion)
S2
Toes/Anal, bladder
sphincter
S3
Anal,
Bladder sphincter
S4
Anal, Bladder
sphincter
S5
Anal,
Bladder sphincter

When you start looking up things like this, it is almost like you need a separate textbook to understand what these pictures are telling you! One site that was very interesting in the amount of depth of information came from medical school notes, found here.

I love medical students that put their studying online like flashcards here.

Plain English please!

All of those muscles get confusing!

 Lesions, Levels, Sensory and Mobility

 

leg back muscles Lesions, Levels, Sensory and Mobility

Especially when your physio talks about ‘oh I think there is definitely ____ muscles, not sure about ____ mucles’ and you are trying to remember grade 12 biology. So Glutes, quadracepts, and hamstrings are the ones that stick out for me on those pictures.

Muscle Ability
Muscle Group
Nerve Innervation
Thigh
flexion
L1,
L2, L3, L4
Thigh
adduction
L2, L3, L4
Thigh
abduction
L4,
L5, S1
Extension
of leg at hip
Gluteus maximus
L5, S1, S2
Extension
of leg at knee
Quadriceps
L2,
L3, L4
Flexion
of leg at knee
Hamstrings
L4, L5, S1, S2
Dorsiflexion
of foot
L4,
L5, S1
Extension
of toes
L4, L5, S1
Plantar
flexion of foot
L5,
S1, S2
Flexion
of toes
L5, S1, S2
Anal
wink
S2,
S3, S4

 

Some sources for this chart here and here.

Muscles receive messages from a number of nerves. Can’t anything be easy?!

So trying to determine what a level is by what someone can do or feel is not as easy as the colourful pictures lead you to believe. If you are trying to determine the functional level that your child has, I am just repeating what I found online as well as what our physiotherapist explained to us. I used alot of this information to try to decode or translate what we were told – not to diagnose. (OK maybe I tried to diagnose a little big when I didn’t like what I was being told)

I looked at a bunch of articles that talked about flexion and extension and abduction/adduction. Then I had to look up what all of those meant, and then I had to look up pictures.

Abduction
abduction Lesions, Levels, Sensory and Mobility
 Adduction
adduction Lesions, Levels, Sensory and Mobility
Knee flexion
knee+extension Lesions, Levels, Sensory and Mobility
Knee extension
knee+flexion Lesions, Levels, Sensory and Mobility
Hip flexion
hip+flexion Lesions, Levels, Sensory and Mobility

 

dorsiflexion+and+plantar+flexion Lesions, Levels, Sensory and Mobility

This is one of the most frustrating part when you are trying to imagine what you child will be able to do. All of this information and pictures and illustration will not let your child do something that their nerves will not allow them to do.

Labelling your child as a number and letter will not help anything (I can say this from experience and from fighting with myself about wanting a letter and a number). Being aware of what information is out there, and celebrating the achievements and abilities of your child and trying to educate yourself  is what I hope people get out of this information post.

SB University

By Amanda Ridding If you are looking at any information about spina bifida I’m hoping that you will explore SB University.
http://www.sbuniversity.org/

This is an online platform to ‘purchase’ courses. I say ‘purchase’ because they are all free, but you still have to add them to your shopping cart and go through the process of buying something, without ever putting in any kinds of credit card information, because it is free.

These free webinars are offered through the Spina Bifida Association.

What is more incredible than free education that I can learn about right in my own family room.

At the end of it you can even print a certificate of completion (If education hours are important).

I’m still currently exploring all of the different webinars offered. But I’m excited about the bowel and bladder management as well as the introduction into school sessions.
It is not aimed specifically at parents, but healthcare providers, educators, and of course individuals with spina bifida as well.

I’m excited to go through more of the webinars and add some education to this site.
But check it out yourself!

Follow-up to landmark spina bifida study could influence future treatment

HOUSTON — Almost 10 years ago, the Management of Myelomeningocele (MOMS) study began comparing two approaches to treatment for a serious form of spina bifida: prenatal surgery versus the standard postnatal repair.

This breakthrough study, funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and published by the New England Journal of Medicine in 2011, found that children whose spina bifida defects were repaired surgically before birth were more likely to walk without the assistance of orthotics or devices. NICHD is one of the Institutes of the National Institutes of Health.

Now, a follow-up study, also funded by NICHD and informally known as MOMS2, is being conducted to determine whether prenatal repair done in the original study influenced the adaptive behavior of these children, now 5 to 9 years of age, compared with those who underwent postnatal repair.

One of the effects in question is the brain development of these children. Jenifer Juranek, Ph.D., a neuroimaging expert with the Texas Fetal Center and the Children’s Learning Institute at The University of Texas Health Science Center at Houston (UTHealth), is performing high-resolution magnetic resonance imaging (MRI) brain sequences on 177 of the children from the original study to investigate if those who underwent prenatal surgery experienced greater structural modification in their brains than those infants who underwent postnatal surgery.

The follow-up brain imaging protocol was set up by Juranek at each of the three original MOMS study sites: Vanderbilt University in Nashville, Tenn., The Children’s Hospital of Philadelphia, and the University of California at San Francisco. Each follow-up image will be analyzed and quantified by Juranek for such key development indicators as brain volume, matter integrity, synaptic pruning (i.e., when excess connections between cells are eliminated) and myelination, which enables nerve cells to transmit information faster and allows for more complex brain processes.

“Researchers have demonstrated that many neurodevelopmental disorders like spina bifida may be linked to poorly-timed cellular events during brain development. These events lead to specific structural and functional brain development,” said Juranek. “With this follow-up study, researchers can evaluate the impact different intervention strategies have on brain structure, function and behavior.”

The results of the MOMS2 study could influence future surgical procedures for babies diagnosed with myelomeningocele, says KuoJen Tsao, M.D., associate professor of pediatric surgery at UTHealth Medical School and a co-director of the Texas Fetal Center.

“The MOMS study gave us data that goes two or three years out from surgery, but we know there is a lot of development beyond that,” said Tsao. “We know there are certain short-term outcomes, but there may be some long-term neurological effects we don’t know about. What’s most exciting about the MOMS2 study is they are going to follow these patients at school age.”

One common risk associated with myelomeningocele is the buildup of fluid inside the skull that leads to brain swelling. This swelling is repaired with shunts inserted into the brain to relieve pressure. The original MOMS study found that prenatal surgery reduced the need for shunts, which may improve long-term brain development.

“Once you put in a shunt you have risks,” said Juranek. “Getting into the center of brain isn’t easy. If you put in a shunt, you are likely to cut through gray and white matter, both of which are responsible for certain brain functions.”

Tsao added, “The important thing about the MOMS2 study is it will answer questions that we are asking now. That’s where Dr. Juranek’s work is very important.”

Other follow-up testing will look at other development factors such as attention, executive function and fine and gross motor skills.

Spina Bifida Awareness Video

By Amanda Ridding

default Spina Bifida Awareness Video

This is a video that I created to spread awareness for spina bifida month in June.

Sharing my take on Bowel Continence

By Amanda Ridding

colon Sharing my take on Bowel Continence

Trying to become socially continent is a journey and a challenge. There is no right answer, there is just a lot of trial and error as well as a progression through various steps. This post isn’t about constipation – that would take a whole different post. It isn’t about consistency of poop, but about consistency in timing.

I call the bowel a stubborn teenager that yells “I won’t do it! You can’t make me!” And folds it’s arms and stomps its feet until you wear it down but doing the same thing over and over again.

So anything that you doesn’t happen over night. To say that something was a fail means that you tried it for weeks before saying that it didn’t work.

My knowledge comes from my own experience and what I have learned over the last couple of years. And it is by no means extensive.

We progress through the poop steps of least invasive to most invasive.
There is wide ranges to spina bifida and neurogenic bowel, so there would be wide ranges to the ability to become socially continent.

  • Diet – I had a great dried fruit combo for baby food that kept Nick regular when he was a baby, but this was more about keeping him from getting constipated than getting him clean. Because as a baby diapers is expected.
    • Staying away from cows milk is also a biggy in our house. For milk we use almond milk or goats milk. Goats milk is easier to digest than cows milk and less constipating.
  • Oral laxative – PEG flakes (Restoralax) we give every morning, in oatmeal, it is quick and easy, doesn’t have a bad taste. We can adjust it up and down depending on what we need. Right now we are at 1tsp every morning (but have gone up to 3Tbsp when we really need it). And as I’ve heard there isn’t a maximum dose.
    • We have tried some other medications like lactulose (didn’t like it, didn’t work, it was a liquid and he needed to take it too often for it work into our lifestyle)
    • Senna we haven’t tried. I’ve heard very negative things about senna and want to stay away from it for now. I’ve heard that it is habit forming, which doesn’t really make sense because the neurogenic bowels need the habit.
    • Omega-3 and probiotics, we used this as a supplement for a while and it made a huge difference, but we still needed the restoralax. We are on a break right now, but I find it makes Nick smell like fish for a while. Will probably start it again soon
  • Stimulation. You are stimulating the muscles to work. This can happen by gently pressing around the anus
  • Suppositories. Again medication. It seems like this has a couple of steps
    • Glycerin is the first step, but we found it didn’t do anything to help.
    • Ducolax is a medicated suppository, the medication in it also stimulates the bowel to move. This has been great for preventing or keeping him from getting constipated, and when we do it every day or every other day we get things moving, but I found he is leaking all the next day. So it just isn’t working for getting him clean.
  • Enema. This is using liquid (with or without something added to it) to clean out the colon more completely than the suppositories will do. The more comes out at one time with the enema the less that can come during the day. This is a retrograde enema – so it works in the colon from the bottom (literally) up.
    • There are different types of enemas.
    • A regular tip enema, but I found that using this (like a fleet enema) doesn’t work. You have to have the muscle control to tighten around the tip, which Nick does not have, so the fluid doesn’t stay in, which is the whole point. And just squirts right back out. So this hasn’t worked for us.
    • A cone enema, is the step we are currently on. It is typically used for cleaning out colostomies. And it is cone shaped to fit into the hole of the colostomy, but we are using it for a different reason. The cone shape means that we can create a stopper without the muscle control. So the fluid that goes in, stays in to work, and when the fluid comes out, so does all of the poop in the colon.

    • A catheter type of enema – this is newer and more expensive. But it works to do the same things as the cone. Instead of the cone shape it is a tube with a balloon at the end to keep the tube in place and keep the water from coming out.
6262008113038 Sharing my take on Bowel Continence
    • Once all of the fluid has been put in, the tube or cone or whatever comes out. This way the bowel is clean as far up as the fluid can go.
  • Surgery. This is the final step. But we are not there yet. There are 2 different types of surgeries, it takes the enema solution and starts at the top of the colon, (called an antegrade enema) around where the appendix is, and cleans the colon from that point and down. It seems to me to be the most effective way, but also the most invasive – because it involves surgery.
ace Sharing my take on Bowel Continence

What the MACE stands for is Malone (the guy who discovered it in the 80′s) Antegrate Continence Enema. So they take the appendix (which is already attached to the top of the colon) and make it so that it connects to the belly button, so that a tube can go into the colon and put the enema solution from the top and clean out the entire colon. It is a laproscopic surgery, it will not interfere with the shunt tip, he says there is a quick recovery from it. On the outside the belly button will just look like an inny (this is how our urologist explained it – I tried to find some pictures to see what the results actually looks like, but I can’t fine one). There is something about a flap or something that comes down – so that things don’t back up the wrong way.
You need to have an appendix to have this as an option.
This is a chapter in a textbook. It has pictures
http://www.biliaryatresia.org/reference/Malone-procedure.pdf

The other kind of surgery isn’t really surgery. It is a ceacostomy button. It is when they take a tube, and through radiology guided the poke the tube from the belly into the colon. Then the tube stays in, and on the outside is a button that stays closed when you don’t need it. This is just like a g-tube. If it not needed it can be removed.

cecostomy+tubing Sharing my take on Bowel Continence

The urologist was not very positive about this (but he is a surgeon that does the MACE, so I’m not surprised).
The button seems less invasive, but if we are putting something foreign into the body it can get infective, whereas the MACE is more invasive but less likely to get infected or have the body ‘reject’ it.

This is so far the extent of my research to share. Other sites I found useful are:

http://www.mededmasters.com/anterograde-continence-enema-ace-procedure.html
http://addberbe.hu/templates/ja_zeolite/images/cecostomy-picture

Prenatal Surgery Lessens Spina Bifida Affects

One of the most common birth defects, spina bifida, or “split spine” in Latin, affects as many as 1 in 1000 live births. This occurs when the two sides of the spine do not fuse together during the first month of pregnancy, leaving an opening in the spinal cord area. There are three main types of spina bifida, with the least severe type causing little or no symptoms. However, the most severe type, myelomeningocele affects 1 in 3000 babies, and can lead to the spinal cord and surrounding tissues poking out of the baby’s back. Approximately 10% of these babies will die after birth, while the rest may suffer from a variety of symptoms.

Hydrocephalus is a buildup of fluid in the brain which is common in babies diagnosed with myelomeningocele. This leads to the need for a permanent placement of a shunt to drain the fluid, which can be dangerous. To help place this shunt, as well as treat any portions of the spinal cord which may exist outside of the spinal opening, surgery is usually performed on babies only a day or two after birth. However, with new forms of medical technology, it has become possible to perform this spinal surgery while the baby is still in the womb.

The first prenatal spinal surgery to treat spina bifida was performed in 1997 at Vanderbilt University. The fetus is not removed from the womb during this procedure, but rather stays there unharmed as the mother’s uterus is opened up to perform this procedure. Recent clinical trials studying the effectiveness of prenatal surgery show that many complications of spina bifida can be lessened the earlier that the surgery is performed. In a study undertaken at Vanderbilt University, the Children’s Hospital of Philadelphia, and University of California in San Francisco, half of the mothers in the trial had surgery in between the 19th and 25th week of their pregnancy. The rest had surgery after the baby was born.

The findings from the study were overwhelmingly positive, with children who had prenatal surgery showing better leg function, more advanced motor skills, and less need of a shunt. Only 40% of the babies who had in-utero surgery needed a shunt, compared to 82% of those babies who had surgery later on. According to Dr. Noel Tulipan of the Vanderbilt University Medical Center, the reason why the surgery may be more effective early on is because the longer that a spinal cord is exposed to amniotic fluid, the higher the chance that it will become damaged.

The study was carried out for seven years before it was stopped early on due to the positive results. As a result, women who find out through prenatal testing that they are carrying babies with spina bifida will have the option in the future of undergoing prenatal surgery at either the University of California in San Francisco or the Children’s Hospital of Philadelphia. Further studies are being undertaken to improve results.

References:

1. http://healthland.time.com/2011/02/09/operating-on-babies-in-utero-for-spina-bifida-its-the-way-

2. http://www.bbc.co.uk/health/physical_health/conditions/spinabifida2.shtml

Prenatal surgery – MOMS study

By Amanda Ridding

Samuel Alexander Armas 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.

http://www.ctv.ca/CTVNews/Health/20110209/spina-bifida-surgery-110209/

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.
myelominingocele anatomy lrg Prenatal surgery   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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