Friday, December 7, 2012

♥ The Twelve Days of Christmas ♥
 
On the first day of Christmas, the good Lord gave to me: a child with a disability.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with a disability.
 
On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.
 
On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.
 
On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a disability.
On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.
 
On the eleventh day of Christmas, the good Lord gave to me: a sense of pride, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability

Tuesday, October 30, 2012

What Does Spina Bifida Look Like? SBA Day 30

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

All the way from the UK!
Destiny Angel
Age 10 months

And today's Double Dose is.....

Kayla
Age 25 Years Old

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Monday, October 29, 2012

What Does Spina Bifida Look Like? SBA Day 29

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Kaylin
Age 3 (almost 4!)

And for today's Double Dose:

Tucker
Age 4

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Sunday, October 28, 2012

Need Age What Does Spina Bifida Look Like? Day 28

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Charlie
Age 16

And today we get another DOUBLE DOSE of friendly faces!


Taylor
18 months!

And today is Taylor's super mommy's birthday, so let's all take a second and wish Stephanie a big ole happy birthday!


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Saturday, October 27, 2012

What Does Spina Bifida Look Like? SBA Day 27

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Jaxson Rose
Age: 3.5 months

And for Today's Double Dose
Amanda
Age 22


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Friday, October 26, 2012

What Does Spina Bifida Look Like? SBA Day 26

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Chloe

I strive to be REAL here on my blog. And while there are MANY people who have Spina Bifida and have a great lives, sometimes the journey is harder and the road not what we hoped for. Dear Chloe had a HARD road, and she has grown her wings to join in th heavenly chiors, but she touch SO MANY lives with her short life. Her family and their journey will always be near and dear to my heart. Even in the short time Chloe was with us, she taught lessons to people across the globe. Chloe's life, while short, was NOT wasted! And I KNOW that she is dancing in the streets of heaven with her Heavenly Father right now!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Thursday, October 25, 2012

What Does Spina Bifida Look Like? SBA Day 25

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Annabeth
Age 10 months

And today we get a DOUBLE DOSE of Spina Bifida Again!
Please Meet:

Kevin
Age 40


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Wednesday, October 24, 2012

What Does Spina Bifida Look Like?? SBA Day 24

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Michelle
Age 41

And today we get a DOUBLE DOSE of Spina Bifida! Please Meet:
Laura
Age 2


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Tuesday, October 23, 2012

4th Grader's Invention

My daughter, who is in 4th Grade, was given an assignment to make an invention. And the teacher is really big on it being an ORIGINAL invention. I thought this assignment was pretty tough for a 4th grader, but what do I know!

So Audrey looked around the house for a problem that she could solve with her invention. I had to laugh when she told me what she had decided to invent. She said that the biggest problem in our house is messy catheters.... and she is probably pretty right!

It is NOT always this messy, we sort of let them pile up to make a point for the project.

So, my darling daughter, decided to make The Clean Catheter Station for her invention! I am proud of her for trying to help her brother keep his caths cleaned up instead of just always complaining that he messes up their bathroom!

This is what she came up with:


Instructions For Use:
Preparation For Use:
1)                 Put 5 squirts of soap or sanitizer in The Clean Catheter Station
2)                 Fill with water to the “Fill Line”
3)                 Place lid on tightly on The Clean Catheter Station
4)                 The Clean Catheter Station is now ready for use
Use:
5)                 After using a catheter, open the pop top lid and insert catheter into The Clean Catheter Station
6)                 Snap the pop top lid shut completely
To Clean Catheters:
7)                 Make sure lids are on securely
8)                 Holding your hand over the lid, shake The Clean Catheter Station for 30 second
9)                 Remove larger lid
10)            Pour catheters into drain station or the sink and rinse completely with hot water
11)            Place catheters on a towel to dry
12)            Rinse out The Clean Catheter Station with hot water.
13)            Use over again by returning to step one, as see above.

Catheter Chaos to CLEAN in one easy step with
The Clean Catheter Station!


My silly, cute and inventive 4th Grader strikes again!


What Does Spina Bifida Look Like? SBA Day 23

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Jackson
Age 16 months

And today we get a DOUBLE DOSE of cuteness:


Charlotte
Age 2.5 years
Fellow Fetal Surgery Baby!
*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Monday, October 22, 2012

What Does Spina Bifida Look Like? SBA Day 22

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Amanda
AKA "Ms. Adventure!"
Age 38

And because Amanda gave me so many great quotes to choose from I made her a special treat too:



*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Sunday, October 21, 2012

What Does Spina Bifida Look Like? SBA Day 21

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Elizabeth
Age 33


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Saturday, October 20, 2012

What Does Spina Bifida Look Like? SBA Day 20

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Another of our LOCAL friends, Evan!
Age 25
*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Friday, October 19, 2012

What Does Spina Bifida Look Like? SBA Day 19

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Easton
Age 21 Months

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Thursday, October 18, 2012

What Does Spina Bifida Look Like? SBA Day 18

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


This is our LOCAL friend, Jessie!
Age 9

Jessie would also like to share with you a link to a new Special Abilities Dance and Music Program here in our County! If you are interested, please check it out HERE!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Wednesday, October 17, 2012

What Does Spina Bifida Look Like? SBA Day 17

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Logan
Age 3 TODAY!!!!

Happy Birthday Sweet Logan!!!

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Tuesday, October 16, 2012

What Does Spina Bifida Look Like? SBA Day 16

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Ciarlo
Age 2 Years Old

*Ciarlo is actually having surgery today to get some ear tubes in, so if you are a praying friend, please say a little prayer for this sweet little boy today!*

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Monday, October 15, 2012

What Does Spina Bifida Look Like?? SBA Day 15

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Abi
Age 3 Years Old

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Sunday, October 14, 2012

What Does Spina Bifida Look Like? SBA Day 14

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Tanner
Age 3 years old


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Saturday, October 13, 2012

What Does Spina Bifida Look Like? SBA Day 13

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Magan
Age 39

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Friday, October 12, 2012

What Does Spina Bifida Look Like? SBA Day 12

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:

Levi
Age: 9 Months

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Thursday, October 11, 2012

What Does Spina Bifida Look Like? SBA Day 11

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Madi
Age: 3 years old


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Wednesday, October 10, 2012

What Does Spina Bifida Look Like? SBA Day 10

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Liv
Age: 8 Months


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Tuesday, October 9, 2012

What Does Spina Bifida Look Like? SBA Day 9

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Kate
Age: 9 years old


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Monday, October 8, 2012

What Does Spina Bifida Look Like? SBA Day 8

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Laurita Tellado Calderón
Age: 25


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Sunday, October 7, 2012

What Does Spina Bifida Look Like? SBA Day 7

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Francis Roberson & Friends


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Saturday, October 6, 2012

What Does Spina Bifida Look Like? SBA Day 6

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Brian
Age 4 years old


*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Friday, October 5, 2012

What Does Spina Bifida Look Like? SBA Day 5

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:
Chase
11 ½ months

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*


Thursday, October 4, 2012

What Does Spina Bifida Look Like? SBA Day 4

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Kumaka
Age 5

To find out more about Kumaka and his amazing family visit them HERE

*Would you like to participate in my Spina Bifida Awareness posts?? Just email me some pictures of yourself (or your child), you name and age and I will do the rest! Send all information to simplysoares@att.net !*

Tuesday, October 2, 2012

What Does Spina Bifida Look Like? SBA Day 2

It is OCTOBER!!!!

You know what that means, right???

SPINA BIFIDA AWARENESS MONTH is HERE!!!!

This year words are too much for me.
Plus they say pictures are worth a 1000 words, right?

So THIS is what Spina Bifida looks like:


Nathaniel
12 years old

Monday, October 1, 2012

Spina Bifida: What Is It?


Are you aware of the fact that October is Spina Bifida Awareness month???

 I know that there are a GREAT MANY of questions out there as to what Spina Bifida IS, and how it manifests. The one thing that frustrates me to NO END is that there is no constant in Spina Bifida, it is different in EVERY person with it, but there are some basics. Tiffany did an AWESOME job of gathering those basics and writing the following article, which I would like to share with you today, in hopes that it will help you, my dear friends and family, better understand what exactly Spina Bifida is! It is a fairly long read, but I hope you will take the time (5 minutes or so) to read it and gain some knowledge, because I FIRMLY believe that knowledge is power!

Spina Bifida is a birth defect that affects the lower back and, sometimes, the spinal cord. It is one of the most common birth defects in the United States, affecting about 1,500 babies each year (1).

Spina bifida is the most common of a group of birth defects called neural tube defects (NTDs). The neural tube is the embryonic structure that develops into the brain and spinal cord. The neural tube normally folds inward and closes by the 28th day after conception. When it fails to close completely, defects of the spinal cord and vertebrae (small bones of the spine) can result.

How does spina bifida affect a child?

There are three forms of spina bifida:

1.Occulta: In this mildest form, there are usually no symptoms. Affected individuals have a small defect or gap in one or more of the vertebrae of the spine. A few have a dimple, hairy patch, dark spot or swelling over the affected area. The spinal cord and nerves usually are normal, and most affected individuals need no treatment.

2.Meningocele: In this rarest form, a cyst or fluid-filled sac pokes through the open part of the spine. The sac contains the membranes that protect the spinal cord, but not the spinal nerves. The cyst is removed by surgery, usually allowing for normal development.

3.Myelomeningocele: In this most severe form, the cyst holds both the membranes and nerve roots of the spinal cord and, often, the cord itself. Or there may be a fully exposed section of the spinal cord and nerves without a cyst. Affected babies are at high risk of infection until the back is closed surgically, although antibiotic treatment may offer temporary protection. In spite of surgery, affected babies have some degree of leg paralysis and bladder- and bowel-control problems. In general, the higher the cyst on the back, the more severe the paralysis.

What causes Spina Bifida?

The causes of spina bifida are not completely understood. Scientists believe that both genetic and environmental factors act together to cause this and other NTDs. However, 95 percent of babies with spina bifida and other NTDs are born to parents with no family history of these disorders.

Who is at risk of having a baby with Spina Bifida?

Anyone can have a baby with spina bifida. However, couples who have already had a baby with spina bifida or another NTD have an increased risk of having another affected baby. A couple with one child with spina bifida usually has about a 4 percent chance of having another affected baby, and a couple with two affected children has about a 10 percent chance of having another affected baby. Similarly, when one parent has spina bifida, there is about a 4 percent chance of passing the disorder on to the baby. Couples who have had an affected baby or have a family history of NTDs should consult a genetic counselor to discuss risks to their future children.

In most cases, spina bifida occurs by itself. However, sometimes spina bifida occurs as part of a syndrome with other birth defects. In these cases, recurrence risks in another pregnancy may vary widely.

Women with certain health conditions are at increased risk of having a baby with spina bifida. These conditions include:

•Obesity
•Poorly controlled diabetes
•Treatment with certain anti-seizure medications

Women with these conditions should consult their health care provider before pregnancy about steps they can take to reduce their risk of having a baby with spina bifida. For example, they can achieve a healthy weight before pregnancy, control their diabetes, change anti-seizure medications and take folic acid (see below).

Spina Bifida and other NTDs occur more commonly in some ethnic groups than others. For example, NTDs are more common in Hispanics and Caucasians, and less common among Ashkenazi Jews, most Asian ethnic groups and African-Americans.

How is Spina Bifida treated?

Occulta: This condition usually requires no treatment. Most individuals don’t know they are affected, unless the defect is diagnosed during an X-ray for some other reason. Occasionally newborns are diagnosed with this form of spina bifida if they have a dimple or other marking on their back. In some cases, these babies may need to be evaluated for spinal cord abnormalities that could eventually result in complications, such as weakness or numbness in the legs and bladder problems. Occasionally surgery is recommended to prevent these problems.

Meningocele: This defect is repaired surgically, and affected babies usually have no paralysis.

Myelomeningocele: This form of spina bifida usually requires surgery within 24 to 48 hours after birth. Now there are also options to have this repaired before birth, but those surgeries are still very rare. Doctors surgically tuck the exposed nerves and spinal cord back inside the spinal canal and cover them with muscle and skin. Prompt surgery helps prevent additional nerve damage and infection. However, nerve damage that already has occurred cannot be reversed. Soon after surgery, a physical therapist teaches parents how to exercise their baby’s legs and feet to prepare for walking with leg braces and crutches. Many children with a defect in the lower spine can walk with or without these devices, although most children with a defect high in the spine require a wheelchair.

What medical problems occur with Spina Bifida?

Common medical problems include:

Hydrocephalus: About 70 to 90 percent of children with myelomeningocele develop hydrocephalus, a build-up of fluid in and around the brain. Cerebrospinal fluid cushions and protects the brain and spinal cord. When the fluid is unable to circulate normally, it collects in and around the brain, causing the head to be enlarged. Without treatment, hydrocephalus can cause brain damage and mental retardation.

Doctors usually treat hydrocephalus by surgically inserting a tube called a shunt that drains the excess fluid. The shunt runs under the skin into the chest or abdomen, and the fluid passes harmlessly into the child’s body. A newer surgical procedure called endoscopic third ventriculostomy creates a new pathway for draining cerebrospinal fluid. This procedure may be recommended for some children older than 6 months, including some who experience shunt malfunctions.

Chiari II Malformation: Nearly all children with myelomeningocele have an abnormal change in the position of the brain. The lower part of the brain is located farther down than normal and is partly displaced into the upper part of the spinal canal. This can block the flow of cerebrospinal fluid and contribute to hydrocephalus. In most cases, affected children have no other symptoms. But a small number develop serious problems, such as breathing and swallowing difficulties and upper body weakness. In these cases, doctors may recommend surgery to relieve pressure on the brain.

Tethered Spinal Cord: Most children with myelomeningocele, and a small number with meningocele or spina bifida occulta, have a tethered spinal cord. This means that the spinal cord does not slide up and down with movement as it should, because it is held in place by surrounding tissue. Some children have no symptoms, but others develop leg weakness, worsening leg function, scoliosis (curvature of the spine), pain in the back or legs, and changes in bladder function. Doctors usually recommend surgery to release the spinal cord from surrounding tissue. After surgery, a child should return to his usual level of functioning.

Urinary Tract Disorders: Because of nerve damage, individuals with myelomeningocele often have problems emptying the bladder completely. This can lead to urinary tract infections and kidney damage. A technique called intermittent catheterization, in which the parent or child inserts a plastic tube into the bladder several times a day, is often helpful. Children with spina bifida should have regular care by a urologist (a doctor who specializes in urinary tract problems) to help prevent urinary tract problems.

Latex Allergy: According to the Spina Bifida Association (SBA), many children with myelomeningocele are allergic to latex (natural rubber), possibly due to repeated exposures during surgeries and medical procedures (4). Symptoms include watery eyes, wheezing, hives, rash and even life-threatening breathing problems. Doctors should consider using non latex gloves and equipment during procedures on individuals with spina bifida. Affected individuals and their families should avoid latex items often found in the home and community, such as most baby bottle nipples, pacifiers and balloons. A list of safe and unsafe items is available from the Spina Bifida Association.

Learning Disabilities: At least 80 percent of children with myelomeningocele have normal intelligence. However, some have learning problems.

Other conditions: Some individuals with myelomeningocele have additional physical and psychological problems, such as obesity, digestive tract disorders, depression and sexual issues.

With treatment, children with spina bifida usually can become active individuals. Most live normal or near-normal life spans.

Can Spina Bifida be prevented? 

Some research shows a B-vitamin called folic acid can help prevent spina bifida and other NTDs. Studies show that if all women in the United States took the recommended amount of folic acid before and during early pregnancy. It is important for a woman to have enough folic acid in her system before pregnancy and during the early weeks of pregnancy, before the neural tube closes.

The March of Dimes recommends that all women of childbearing age take a multivitamin with 400 micrograms of folic acid every day before pregnancy and during early pregnancy, as part of a healthy diet. However, a woman should not take more than 1,000 micrograms (or 1 milligram) without her provider’s advice.

Women who already have had a baby with spina bifida or another NTD, as well as women who have Spina Bifida, diabetes or seizure disorders, should consult their health care provider before another pregnancy about the amount of folic acid to take. Studies have shown that taking a ten-fold larger dose of folic acid daily (4 milligrams), beginning at least 1 month before pregnancy and in the first trimester of pregnancy, reduces the risk of having another affected pregnancy by about 70 percent.

Can Spina Bifida be detected prenatally?

Health care providers routinely offer pregnant women screening tests to help identify fetuses at increased risk of Spina Bifida. These screening tests include a blood test called the quad screen and an ultrasound. The blood test measures the levels of four substances in the mother’s blood to identify pregnancies at higher-than-average risk of Spina Bifida and other NTDs, as well as Down syndrome and certain related birth defects.

If the screening test suggests an increased risk of spina bifida, the health care provider may recommend additional tests that are accurate in detecting severe Spina Bifida. The tests are a detailed ultrasound of the fetal spine and amniocentesis. A detailed ultrasound can help determine the seriousness of Spina Bifida and whether certain complications are present. In amniocentesis, the doctor inserts a needle into the woman’s uterus to take a small sample of amniotic fluid. The fluid is sent to a lab to measure levels of alpha-fetoprotein (AFP) in the fluid. An abnormal amount of the protein in the fluid is associated with Spina Bifida.

What are the benefits of detecting Spina Bifida before birth?

When Spina Bifida is diagnosed early in pregnancy, women can consult with their health care provider to learn more about the disorder and to consider their options. For example, they can plan for delivery in a specially equipped medical center so that the baby can have any necessary surgery or treatment soon after birth. Now the option of prenatal surgery is also available if the condition is detected early enough.

Parents and doctors also can discuss whether a vaginal or cesarean delivery would be best for their baby. Fetuses with myelomeningocele are more likely than other babies to be in a breech (feet-first) position. A cesarean delivery is generally recommended for these babies. Some doctors may recommend a cesarean delivery for babies with myelomeningocle who are in a normal head-first position, especially if they have a large cyst. One study found that a planned cesarean delivery can reduce the severity of paralysis in babies with myelomeningocele; however, several studies found no reduction in paralysis in babies delivered by cesarean.

More than 400 babies have undergone experimental prenatal surgery to repair myelomeningocele before birth. This approach is based on the idea that early repair (between the 19th and 25th weeks of pregnancy) may help prevent damage to exposed spinal nerve tissue in the womb and reduce paralysis and other complications. Preliminary results suggest that children who have prenatal surgery have improvements in the Chiari Malformation and may need a Hydrocephalus shunt less frequently, but their bladder and bowel function do not appear to be improved. One study found better-than-expected walking ability in toddlers, but other studies did not. This procedure poses surgery-related risks to mother and baby and puts the baby at high risk of premature delivery (before 37 completed weeks of pregnancy). Prematurity increases the risk of health problems during the newborn period and lasting disabilities. Doctors do not yet know whether the benefits of prenatal surgery outweigh these risks.

To find out whether prenatal or postnatal surgery is more effective, the National Institute of Child Health and Human Development (NICHD), a part of the National Institutes of Health (NIH), is conducting a study to compare the results of both types of surgery in 200 babies with myelomeningocele. Half of the babies undergo surgery before birth, while the other half have surgery shortly after birth. The surgery is being carried out at three major medical centers: Children’s Hospital of Philadelphia, the University of California at San Francisco and Vanderbilt University Medical Center in Nashville. More about this research is available at the study Web site or (866)-ASK-MOMS (866-275-6667).

Is the March of Dimes conducting research on Spina Bifida?

Several March of Dimes grantees are searching for genes that may contribute to Spina Bifida and other NTDs to develop new ways to prevent these disorders. Others are seeking a better understanding of how folic acid prevents NTDs, to make this treatment even more effective.

The March of Dimes is a member of the National Council on Folic Acid, an alliance of organizations working to promote the benefits and consumption of folic acid.

Where can families find additional information on Spina Bifida?

More information is available from:

Centers for Disease Control and Prevention (CDC)
American Academy of Pediatrics (AAP)
Spina Bifida Association (SBA)

Thank you for taking the time to read this, I hope itgave you a better understanding of what Spina Bifida is!