Dislocated Hips

It is not uncommon for a child with SB to be born with one or two dislocated hips. Oftentimes this is caused by the hip sockets not fully forming which allows the ball of the femur to "pop" in and out of the socket.

While it sounds counter intuitive, standard medical practice is to leave the hip(s) dislocated rather than correct it with surgery. Anytime surgery is done, scar tissue is left behind. When you develop scar tissue in an area of the body that is involved in dynamic movement (such as the hip), scar tissue reduces range of motion and increases discomfort.

Unless the dislocated hip(s) is interfering with with the child's development and abilities, it is better to leave it as is.

Parents Note:

Our Annie was born with two dislocated hips. It was a real shock to us when the doctors did not want to correct them but now we fully understand. Annie's hips being dislocated does not cause her any discomfort and they don't hold her back in any way. Of course, she does get her legs in some pretty wild positions from time to time! Here she is at 25 months:

But is has just become one the unique and endearing things we love about her.

Further Reading:

"Dislocation of Hip" on Wikipedia

Urinary Tract Infections (UTI) Causes and Cures

UTI's can be divided into two categories: Lower (bladder) and Upper (kidneys). Upper infections usually stem from a previous lower infection. Children who are following a regime of Intermittent Catheterization are more likely to develop UTIs. Females are also more likely than males to develop UTIs.

Causes:

Most UTIs (80-85%) are caused by the bacteria E. coli which is present in fecal matter.

Cures:

Most UTIs can be treated by a course of antibiotics.

Symptoms (from Wikipedia):

The most common symptoms are burning with urination and having to urinate frequently. Some pain above the pubic bone or in the lower back may be present. People experiencing an upper urinary tract infection may experience fever, nausea and vomiting. Rarely the urine may appear bloody or contain pus in the urine.

In young children, the only symptom of a urinary tract infection (UTI) may be a fever. Because of the lack of more obvious symptoms, when females under the age of two or uncircumcised males less than a year exhibit a fever, a culture of the urine is recommended by many medical associations. Infants may feed poorly, vomit, sleep more, or show signs of jaundice.

Prevention:

The best thing you can do for an infant or toddler to prevent UTIs (particularly with females) is to make sure their diaper stays clean. The longer fecal matter stays in their diaper, the higher the risk for UTI's

If your child is Intermittently Catheterized, it is very important to use best practices to ensure cleanliness so that the insertion of the catheter does not introduce E. coli bacteria into the unrinary tract.

Further Reading:

"Urinary Tract Infection" on Wikipedia

Can Children with SB be Potty Trained?

The short answer is , "Yes. Some can be potty trained in a typical fashion, many will have to be potty trained with some adaptations."

At its core, the definition of "potty trained" is not going when you shouldn't and going when you should. When a child has diminished sensation and/or control over their bladder and bowels this requires some unique approaches that can result in some unique advantages.

BLADDER:

Not Going When You Shouldn't:

Many children with SB do not have the ability to "hold it" and so medication such as Oxybutynin (ex; Ditropan) is prescribed. Essentially what Oxybutynin does is relax the bladder and allow it to fill without emptying.

Going When You Should:

Since a bladder on Oxybutynin is not emptying on its own, a regular habit of intermittent catheterization is prescribed to empty the bladder at regular intervals (3-4 hours).

This combination of medication and catheterization allows the child to remain dry. Potty training essentially comes down to teaching a child how to catheterize themselves. This usually occurs sometime between age four and early grade school years.

BOWEL:

Not Going When You Shouldn't:

Because most children with SB have slow bowels, they usually struggle with constipation. This is often managed through a combination of diet and the use of Polyethlene Glycol (such as Miralax) as a supplement.

Going When You Should:

The bowels can be emptied in a number of ways including various enemas, digital stimulation (in the case of infants and toddlers) or high doses of Polyethlene Glycol which takes effect over a period hours or days.

One of the most popular ways to manage bowels is through a Malone Antegrade Continence Enema or "MACE" procedure. The MACE procedure creates a hole through the abdominal wall which connects to the appendix. A hole is left in the abdominal skin which can be covered up by a small band aid. When it is time to flush the bowels, a small tube is inserted through the hole and saline solution is administered. This works exactly like an enema except that the fluid is coming from the top-down and flushing the bowels instead of from the bottom-up which is less effective.

Don't Be Afraid to Get Second Opinions

SB is a complex condition and while each of your doctors will address their specific discipline (Orthopedics, Neurology etc) you, as a parent, will juggle them all. It was a surprise to me when I finally came to the realization that I am in charge of what is best for my daughter - not the doctors - they work for me.

If your aren't feeling good about what a doctor is telling you, ask questions - challenge them even. Doctors make a decent living - they should be able to explain and defend their recommendations to a parent in a way that makes sense. If you are not satisfied with the information you are receiving, get a second opinion and don't apologize for it.

No one is going to ultimately look out for the best interests of your child better than you. Don't be afraid to get second opinions.

Parents Note:

Here are some examples of when we have sought out second opinions:

Perinatologist: The perinatologist we were initially referred to creeped us out. We did not like the way she approached us and got the clear sense that she was actually pushing her values on us - values that we did not share. We asked everyone we knew for recommendations and found a WONDERFUL medical group that ultimately delivered our daughter.

Urologist: The urologist we were initially sent to rubbed me the wrong way. She seemed "put out" by my gentle (really) questions and at one point snapped at me during an exam. We asked our pediatrician for a new referral and ended up with a Urologist whom we greatly admired.

Orthopedics: We really like our orthopedic team however we want to explore all options when it comes to treating Annie's spine. Our orthos seem to have "their way" of doing things so we have made an appointment to take Annie to Shriners in LA for a second opinion. Again, we have no problem with our ortho team but for the sake of our own consciences we feel we need to get a friendly second opinion.

What is a Latex Allergy?

Latex products are made with natural rubber. Hospitals used to rely heavily on latex products (such as rubber gloves) until they began seeing an increased allergic reaction to the use of latex with patients. Allergic reactions to latex come not only from contact with the latex product but also from inhalation of the latex powder that is usually present such as inside a rubber balloon.

Patients who spent the most time in hospitals and had the greatest exposure to latex seemed to develop the most severe reactions. Since children with SB spent a significant amount of time in hospitals by comparison to the typical population, the incidence of latex allergy in the SB population was high. For that reason, all children born with SB are presumed to have a latex allergy.

Most hospitals no longer use latex products and so there is a decrease in the number of SB children reporting allergic reactions to latex. While most hospitals are now safe, latex balloons are still prevalent and many dentist offices still use latex gloves. In addition, certain fruits (such as avocados) contain natural latex.

Further Reading:

"Latex Allergy" on Wikipedia

How Does SB Effect Cognitive Abilities?

People with Spina Bifida run the full range of typical cognitive abilities . Some are straight "A" valedictorians and some are not. Special attention does need to be given to early development and special education if needed.

Children outside the womb develop abilities very similar to how their bodies develop inside the womb. First comes trunk strength and control, then arm, leg (crawling and walking) and head motor development followed by hand, feet, mouth and eye motor development.

Children have a hard time just skipping over these milestones. For instance, if a child does not have the trunk strength and control to sit up independently and they are constantly gripping their high chair for support, they are going to have a hard time developing the fine motor skills involved in feeding themselves (they don't have a free hand!).

Speech and sensory issues are also common in children with SB but with attentive parents and proper therapeutic and educational services many delays can be minimized if not overcome completely.

Therapies

There are many types of therapeutic approaches to dealing with developmental delays and/or deficits. Here are some of the therapies commonly utilized by people with SB:

Physical Therapy

Physical Therapy deals with gross motor development. Some examples would include trunk strength, crawling, walking movement of arms and range of motion.

Occupational Therapy

Occupational Therapy deals with fine motor skills. Some examples would include self feeding, eating, drinking, movement of the head, grasping with the hands, and writing.

Speech Therapy

Speech Therapy deals with not only expressive speech (speaking) but receptive speech as well (hearing and understanding).

Hippotherapy

Hippo Therapy uses horseback riding to address Physical Therapy, Occupational Therapy and Speech Therapy all at the same time.

Sensory Integration Therapy

Sensory Integration Therapy deals with sight, sound, touch, taste and smell. Some of examples of Sensory Integration Therapy would be exposing the child to different tastes, textures, sights, sounds and smells.

National Expos and Conferences

Abilities Expo
For the last 30 years, Abilities Expo has been the one show dedicated to educating and improving the lives of Americans with disabilities, senior citizens, families, caregivers, healthcare professionals and professional therapists. It has been the nation’s foremost event for companies to demonstrate their products and services to the largest community of end-users and industry professionals.

Independence Expo

Imagine having access to the most valuable resources and innovative products available to improve your independence and achieve your goals. United Spinal Association’s Independence Expo offers just that–– all under one roof and free for you to explore!

Spina Bifida Association of America National Conference
Through exceptional medical sessions, practical workshops, and memorable social events, the SBA National Conference is an exciting and informative event that has truly earned its place as the world’s premier conference serving the Spina Bifida community.

What Causes Spina Bifida?

The short answer is, "We aren't sure". Presently, there is no known cause for spina bifida although there are theories.

While women who give birth to a baby with SB are slightly more likely to give birth to another baby with SB, it is unclear whether SB has a genetic component making one woman more susceptible than another. Other factors include diet, medications and environment.

It is believed that certain medications present in the body during the first weeks of pregnancy may contribute to SB. The medications most cited are anticonvulsants and diabetes medications.

Additional possible causes often cited are: Obesity, being too hot during the first few weeks of pregnancy (such as a hot tub, hot shower, fever, electric blanket), and binge drinking during the first few weeks of pregnancy.

How can women decrease their chances of having a baby with SB?

1) Take at least .4mg of folic acid a day - even if you are not planning on getting pregnant.

It is estimated that the chance of spina bifida occurring can be reduced by up to 70% if women take folic acid supplements. It is for this reason that in 1998 the FDA began requiring that all enriched grain products in the US be fortified with folic acid.

The standard recommended supplement is .4mg (my wife's pre-natal vitamins contained .8mg - twice the recommended dosage). That being said, women who have had a child with spina bifida in the past are encouraged to take up to 5mg a day - more than twelve times the normal dosage.

For folic acid to be effective in reducing the occurrence of SB, a woman should be taking supplements at least three months before conception. For this reason, the Spina Bifida Association of America encourages all women of child bearing age, regardless of sexual activity to take Folic Acid supplements.

Some women have shown an inability to properly absorb Folic Acid. If you suspect you may have a problem absorbing folic acid, consult with your doctor.

2) If you are on any medications, find out now from your doctor if any of them may pose a threat to a pregnancy (even if you are not planning on becoming pregnant). By the time you realize you are pregnant - it may be too late.

3) Avoid extreme heat when possible. If you are lightheaded in the jacuzzi, shower, tub etc., you have over done it.

4) Of course, binge drinking is never a good idea - and now you have one more reason to add to the list.

5) Pay attention to your body - if you think you might be pregnant, start acting as if you are until proven otherwise. Those first three to four weeks are intensely critical to your baby's development.

Fetal Surgery

The Management of Myelomeningocele Study (MOMS) was a study completed in 2010 which determined that in-utero fetal surgery to repair SB could be beneficial. As you can imagine, it is not without risks.

The procedure is very new, so only a few hospitals in the United States perform it.

Your best source for information on fetal surgery is other parents who have had the procedure done.

Spina Bifida Fetal Surgery

This is a Facebook Group for those who have undergone fetal surgery for spina bifida, or are considering it... to offer support, answer questions, or just connect!

Here is a video from the Today Show regarding the MOMS study.

Quality of Life and Longevity

What is the Quality of Life Like for People with SB?

The Spina Bifida and Hydrocephalus Association of Northern Alberta has put together a series of videos to answer that very question.

For encouragement, check out the Inspirational Stories section of this website.

Something to Think About:

When people talk about quality of life, they are really asking, will my child be happy? Isn't that what a good life comes down to? Being happy? If that's true, disability has nothing whatsoever to do with quality of life - its attitude that matters. Does disability provide challenges? Of course. But there are plenty of miserable people in this world who do not have a disability. Is their quality of life better just because they don't have SB?

“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.” – John Lennon

For more information on quality of life issues, get connected with other SB families, check out photos of children with SB, look up famous people with SB, check out this great video at Life Rolls On.

This video by Aimee Mullins is worth 20 minutes of your time.

What is the Average Lifespan of Someone with SB?

The short answer is, "No one knows". Consider this: Anyone born with SB in 1985 was born into a world without personal computers, dvd's, the internet or cell phones. Medical technology is moving so fast that studies on longevity simply can't keep up. It sounds odd but one thing is for sure: in the history of the world there has never been a better time to be born with SB.

Parent's Note: Due to the level of my daughters SB, she is a paraplegic in a wheelchair. I am sometimes asked, "Will she ever walk?", and my answer is, "Not until medical technology catches up with her. But some of the smartest people on the planet are working on it."

What is Intermittent Catheterizing (Cathing)?

Cathing involves inserting a small plastic tube into the urethra and into the bladder to drain away urine. It is typically done every 3-4 hours during waking hours and either continued or discontinued during sleeping hours depending on the situation.

Here is what a basic catheter looks like:

Its just a tube.

There are three basic reasons why a child should be catheterized:

1) Medical Necessity

If the bladder is not emptying properly, urine may back up into the kidneys and damage them. If a bladder is not emptying completely, residual urine my remain in the bladder and crystallize or become infected.

2) Social Acceptance

No child wants to wear a diaper to elementary school. If a child does not have the ability to be continent (hold their urine) then intermittent cathing is a way to drain the bladder periodically which allows the child to remain dry and (more importantly) wear a small liner as opposed to a bulky diaper.

3) Psychological Conditioning

Most children with SB are incontinent. That means that even if cathing never becomes medically necessary, it will become socially desired eventually. Many families have found that beginning cathing in later years such as 5 or 6 for social reasons was met by a lot of resistance on the part of the child. For this reason, many hospitals have a philosophy that you should begin cathing early even if it is not medically necessary in order to get the parents and (more importantly) the child used to it.

Parent's Note:

My wife and I were told to start cathing once we took our daughter home from the hospital. When I asked if it was medically necessary, the hospital said, "No". So we opted not to. We were so overwhelmed that we didn't feel we could handle adding anything that was not medically necessary. Not to mention that cathing a 5 lb baby girl is like trying to thread a needle underwater. Our daughter did not experience any health issues due to us waiting.

As we approached preschool years, we decided to begin cathing for social reasons . Many of the other medical issues we faced when our daughter was born were behind us and our daughter's anatomy was larger. Cathing is really no big deal for us now and takes less than a couple of minutes. However it was a HUGE deal for us when we initially took her home from the hospital.

If your urologist is instructing you to start cathing and you are struggling with it, the key question for you to ask is, "Is this medically necessary at this moment?", and then do what you think is best for you and your family.

Further Reading:

Intermittent Catheter on Wikipedia

1-800 Medical: Kids Club
The 180 Medical Kids Club was created to ease the fears of families like yours that have been told your child needs to catheterize. We'll help you adjust to this new way of life with one-of-a-kind educational materials and fun activities for your child. These will teach you and your child how to use catheters correctly to help reduce the occurrence of infections. 

What is Hydrocephalus?

There is a series of organs in the center of the brain called ventricles. Ventricles produce Cerebral Spinal Fluid (CSF). Your brain essentially "floats" in CSF.

CSF then drains from the base of the skull and travels down the spinal column. Just like your brain, your spinal cord "floats" in CSF. From the spinal column, CFS leeches into your body and is absorbed.

In cases of SB, often the brain is seated farther back in the cranium. In addition, there may be an Arnold Chiari II malformation (see "Banana Sign") which blocks the proper draining of CSF. When the CSF cannot properly drain, the pressure begins to build inside the cranium. This condition is called hydrocephalus.

Fortunately, since the bony plates of an infant's cranium have not yet fused together, infants can tolerate a small amount of pressure building up. However the issue needs to be addressed. The most common way of treating hydrocephalus is though the insertion of a shunt.

A shunt consists of three basic parts:

1) Ventricular Catheter: The neurosurgeon will make a small hole in the skull (often behind an ear but not always). Then a small tube is placed through the hole and into the ventricles. This allows the excess CSF to drain out of the cranium

2) Valve and Reservoir: To regulate how much CSF is allowed to drain, a one-way valve is connected to the ventricular catheter. The valve is then attached to the outside of the skull underneath the skin. Non programmable valves come in various sizes and must be physically replaced if it is found that they are releasing too much or too little CSF. Programmable valves do not need to be replaced to make an adjustment in outflow. Instead, programmable valves are adjusted by magnets placed against the skin over the valve.

Along with the valve, will be a small bubble called a reservoir. This allows a small mount of CSF to remain in that bubble before it drains into the distal catheter. The reason being, if a doctor suspects an infection, there is no need for surgery. The doctor can just insert a needle into the reservoir and extract a sample of CSF for testing.

3) Distal Catheter: From the reservoir, a long tube is attached. This tube runs underneath the skin and down to the abdomen where the CSF is absorbed by the body. In the case of children, additional tubing will be coiled in the abdomen to allow for growth.

Here some xrays of Annie's shunt and tubing at 6 months:

Parents Note: Our Annie had her shunt placed two days after she was born. At around 6 months she had a revision as the ventricular catheter had become blocked. It has been 3 years since that last revision and we almost never think about her shunt anymore. Naturally, at the time of her operations were were stressed out however it has now faded into the background of our "new normal".

Further Reading:

"Hydrocephalus" on Wikipedia

What Are "Clubbed Feet"?

First of all, we can all agree that the term could stand some updating.

Our bodies have an amazing combination of muscles, tendons and ligaments that not only help us to move, but help us to develop in the womb. When mommy feels that KICK to her bladder, that's muscles, tendons and ligaments doing their job. But muscles get their instructions from the brain via the spinal cord and nervous system. If, as in the case of SB, there is a disruption in that neural pathway, the muscles don't get their instructions and so they don't do what they are supposed to do. When that happens, the tendons and ligaments are free to do as they please.

When the tendons and ligaments in the ankle are free to do as they please, they take the path of least resistance. The feet begin to turn inward so that the arch of the foot comes up against the inside of the ankle.

Here is a photo of our daughter's feet at 2 months:

Clubbed feet does not prevent people from walking. It can be treated. Treatment involves two basic stages: 1) Straighten out the feet and 2) Keep them straight.

1) Straighten out the feet

The most common way to straighten the feet and ankles is through a series of castings. Usually within the first two months after birth, your orthopedic doctor will cast your child's feet in such a way as to stretch them towards the proper position. The casts have to go all the way up the thigh because otherwise they will just slip off. A week later, you go in, have the old casts taken off and new casts put on. Depending on your situation, you may go through 8-14 sets of casts. Hopefully the feet will straighten out through casting alone.

If casting alone does not do the trick, your child may have to have tendon release surgery followed by, you guessed it, more casting (our Annie had surgery on both her ankles).

2) Keep them straight

Clubbed feet have a tendency to regress and so Ankle-Foot Orthotics (AFO's) are almost always prescribed. These are basically hard plastic shoes that must be worn most of the day to keep the feet from regressing.

Here are Annie's first AFOs:

Once your little one is in AFO's, you will typically go back for checkups every six months or so.

Further reading:

"Club Foot" on Wikipedia

What is the "Banana Sign"?

The "Banana Sign" (BS) refers to the shape of a portion of the brain called the cerebellum.

The cerebellum sits at the back of the brain just where the spinal cord connects. Often in cases of Spina Bifida, the spinal cord is pulling downward on the cerebellum and the bottom portion of the cerebellum is elongated which is why they call it the "Banana Sign". This condition is called Arnold Chiari. In cases of SB it is often more specifically Arnold Chiari II.

Similar to the "Lemon Sign", the "Banana Sign" goes hand-in-hand with a diagnosis of SB and so it serves as another confirmation that SB is likely present.

Many children with ACII do not show any symptoms and so there is no need to address the condition. In some cases, ACII can interfere with eating, swallowing and breathing and in those cases decompression surgery is the most common approach. De-tethering of the spinal cord is also another approach.

So to unpack this a little more: Due to the defect in the spinal column caused by SB, the spinal cord can become attached (or tethered) to the spinal column. Once a spinal cord becomes tethered, it can begin to pull the cerebellum downward (BS). The cerebellum then gets squeezed in the opening from the skull into the spinal column.

This often prevents cerebral spinal fluid from properly draining from the skull (where it is produced by the ventricles) into the spinal column. Additionally, the increased pressure on the cerebellum can cause problems with eating, drinking and breathing. When that happens, doctors will commonly go into the neck / base of the skull area and try to widen that passageway by removing some bone. This is called decompression. Another approach is to go into the spinal column and de-tether the spinal cord.

Again, many children with SB do not have any symptoms due to ACII and so there is no need to address it.

Parents Note: When we were pregnant, we were told that ACII would prevent our daughter from ever eating or breathing on her own. Annie is now 3 years old and we have never had her show any symptoms concerning ACII

Further Reading:

"Arnold Chiari Malformation" on Wikipedia

What is the "Lemon Sign"

The Lemon Sign (LS) refers to the top-down appearance of the of the shape of a baby's head when seen through an ultrasound. In other words, when an ultrasound looks at a cross-section of the baby's head from the top, two indentations can appear on either side of the forehead above the eyes. This gives the head a shape similar to that of a lemon.

Don't worry! Your child's head will be just as round and shapely as a typical child's once he/she is born. Its just that it appears lemon-shaped on the ultrasound at a certain point in development.

The reason why this temporary LS matters is that it typically goes hand-in-hand with a diagnosis of Spina Bifida and so it serves as one more confirming form of evidence.

Medical Information

For ease of use, this section has been divided into an overview, followed by various areas of the body beginning with the head and ending with the feet.

OVERVIEW:

What is Spina Bifida?

What Causes Spina Bifida?

Quality of Life and Longevity

What About Fetal Surgery?

What is a Latex Allergy?

Therapies

Don't Be Afraid to Get a Second Opinion

HEAD:

What is the "Lemon Sign"?

What is the "Banana Sign"?

What is Hydrocephalus?

How Does SB Effect Cognitive Abilities?

BOWEL AND BLADDER:

Can Children with SB be Potty Trained?

What is Intermittent Catheterizing (Cathing)?

Urinary Tract Infection (UTI) / Causes and Cures

HIPS, LEGS AND FEET:

Dislocated Hips

What are "Clubbed Feet?"

ORGANIZING YOUR MEDICAL INFORMATION

Mother Knows
MotherKnows was founded by parents for parents, revolutionizing the way families manage their children’s health. With access to your child’s health records, you are empowered to fully understand and participate in your child’s medical care.

What is Spina Bifida?

Spina Bifida or "split spine" (SB) is the most common seriously disabling birth defect in the United States. An estimated 5 children are born with SB every day in the US (1 out of every 2340 births).

At conception, the cells of the developing child are a round disk on the wall of the uterus. During the fourth week of pregnancy (often before women even know they are pregnant), that disk rolls in on itself to form a tube which becomes the spinal column; the baby's head develops at one end, the legs at the other and everything else in between.

Note: The spinal column is made up of the bones (or vertebrae) of the spine. The spinal cord is the bundle of nerves that run from the brain, through the spinal column, and to the rest of the body.

In cases of Spina Bifida, that disk of cells on the uterine wall does not completely roll together and close - leaving a gap in the spinal column. The interruption can happen anywhere along the spine; from the cervical to sacral regions. Usually, wherever the split occurs, all the vertebrae below that will be effected.

The higher up the spine that the split occurs, the more severe the consequences may be. Splits at the C1, C2 level can be fatal while people can have SB occur in the sacral level and go their whole lives not knowing they have SB.

There is no precise way to know exactly where the split has occurred while a child is still in the womb. In addition, the nervous system is very complicated and so you cannot simply draw a line through a person's body at the level of their spinal defect and know for certain what they will or will not be able to do. The functional level of SB is often different than the diagnosed level. In other words, a child may have SB occur at T5 but could still have the functionality of a T9 and so on.

There are three classifications of SB:

Spina Bifida Occulta: This is the mildest form of spina bifida. Occulta is the second most common form of SB. Occulta is Latin for "hidden". Many people with this type of spina bifida do not even know they have it, as the condition is asymptomatic in most cases.

Meningocele: This is the second mildest form of SB and also the least common. Individuals with meningocele are unlikely to suffer long-term health problems

Myelomeningocele: This type of spina bifida is the most common and often results in the most severe complications. There is usually some degree of paralysis and loss of sensation below the level of the spinal cord defect.

Parent's Note: We were told during our pregnancy that our daughter had T5-level Spina Bifida, the "Lemon Sign", the "Banana Sign", Scoliosis and two Clubbed Feet. Ours was the second-worst case that our Children's Hospital had seen in a decade. We were told that our daughter would not survive more than a few hours after birth and that if she did she would not be able to breathe or eat on her own. She is now a beautiful 3 year old completing her first year in preschool. In the past 3 years, every SB family I have met has said that their child turned out BETTER (more healthy and whole) than the doctors predicted.

Our Annabelle after a day of surfing. Age 3:

Further Reading:

"Spina Bifida" on Wikipedia

Spina Bifida Association of America