Spina Bifida Meningocele

As a review, spina bifida meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.

With a meningocele, the spinal cord stays inside the back where it belongs. This means that most children with a meningocele will have normal movement and normal feeling in their legs and feet, but not always.

Children born with Spina bifida meningocele will usually have to undergo surgery and the site aboutkidshealth.ca gave a great description of what to expect after giving birth to a child with spina bifida meningocele.

Meningocele and myelomeningocele are usually repaired with surgery

The sac cannot stay outside of the body for a long time. It may tear or get infected. Your baby will have surgery (an operation) to repair the sac within 2 or 3 days of birth. A neurosurgeon will do the operation. A neurosurgeon is a doctor who operates on the brain and spinal cord.

Your baby may need an MRI before her operation, to help the surgeons to better see the spinal cord. An MRI is a machine that takes special pictures of the inside of the body. MRI scan requires a person to be still while the pictures are being taken, and some children need to be given sedation medicine to help them keep still during the tests.

The aim of the operation is to do the following things:

• Close the skin over the sac.
• Prevent infection and further damage to the spinal cord.

The operation will NOT bring back movement and feeling to the baby’s legs and feet.

What happens after the surgery

The surgery takes about 4 hours. After the operation, your baby will spend 3 to 4 hours in the Post Anesthetic Care Unit (PACU) to recover from the anesthetic (sleep medicine). Then your baby may go back to the neurosurgical unit, or she may need to be briefly monitored in the NICU (neonatal intensive care unit).

Your child will have a bandage on her back for 2 to 3 days. The nurse will check the bandage often. The nurse will also check your child’s temperature, heart rate, blood pressure, breathing, leg movements, and pain.

Your child will have a thin tube in her arm. This is called an intravenous (IV) tube. It lets us give fluids and medicines directly into your child’s bloodstream. Your child will have this IV until she is drinking well.

For the first 2 to 3 days after the operation, your child needs to lie flat in bed. This is to prevent leakage of fluid from around the spinal cord. Do not get your child up until the doctor says this is OK.

The nurse will turn your child from side to side about every 2 to 4 hours. This will help prevent sores that may develop from lying in bed and help prevent any chest problems after surgery.

Your child may feel pain at the operative site. Your child will be given medicine to control the pain. If it does not control the pain, speak to your child’s nurse.

Many people will help look after your baby

There is a big team of people who will be caring for your baby:

• a neurosurgeon who will do your baby’s surgery
• a pediatrician, a doctor who will give healthy baby care
• a urologist, a doctor who will care for your baby’s kidneys and bladder
• an orthopedic surgeon who will care for your baby’s bones
• a nurse who will care for your baby day to day
• a nurse practitioner who will be involved in the coordination of care and services
• a physiotherapist who will give your baby exercises to strengthen the legs and feet
• an occupational therapist who will help with feeding and your baby’s development
• a social worker who will help you cope with spina bifida, hospitalization, and being a new parent

Going home

Before you take your child home, the surgeon or the nurse will explain how to take care of your child at home. The instructions will include the following:

• how to take care of your child’s incision (surgical cut)
• what to do with your child’s stitches or staples
• how to tell if your child’s incision becomes infected
• other things to watch for
• what activities your child is able to do

Taking care of your child’s incision

Watch your child’s incision to make sure it is healing well. It is all right if the incision gets wet in the bath. Your surgeon and a nurse will discuss with you how long to wait before your child can have a bath.

Taking care of your child’s stitches

How your child's staples or stitches are taken out depends on the type of staple or stitch that was used. Your surgeon or nurse will tell you what type of stitches were used.

• If your child has staples or stitches that need to be taken out, your family doctor will need to do this. The stitches should be removed about 7 to 10 days after the operation. Staples should be removed about 10 days after the operation. Your doctor will tell you when they need to come out.
• If staples were used, you will be given a special remover to take to your doctor.
• If your child has the kind of stitches that dissolve on their own, you can see your family doctor to have the incision line checked, but the stitches will not need to be taken out.

After your child goes home

Tell your child’s doctor if you notice any of the following things. These mean that your child’s incision could be infected:

• fluid leaking out of the incision
• fluid collection (bulging) at the incision
• redness
• swelling
• smelly discharge from the incision
• fever

Following up after the operation

Your surgeon will see your child in a follow-up clinic visit about 6 weeks after you go home. The appointment may be made for you when your child is discharged. If not, call the neurosurgery clinic to make an appointment yourself.

Your baby may have health problems associated with or caused by spina bifida

As your child grows, you should watch for any changes in bladder or bowel function, back pain, trouble walking, changes in movement of limbs, and irritability. If you have any concerns, seek medical attention.

Some health issues are common for children with spina bifida. The most common ones are described here.

Leg function (movement) and sensation (feeling)

In children with spina bifida, the nerves in the spinal canal are often damaged on improperly formed, and therefore they may not able to control the muscles properly or sometimes feel properly.

Bladder problems

With spina bifida, the nerves that tell the bladder to empty and release urine (pee) are often weak or not working. This means you may have to help your baby to pee and empty her bladder.

When your baby is born, we will put a tube inside her bladder through the urethra every few hours to see if your baby can pee on her own and empty the bladder. The urethra is the tube inside the body that carries urine from the bladder to the outside of the body. If your baby is unable to fully empty her bladder, she is at risk for an infection and possibly damage to her kidneys. You may need to learn how to empty your baby’s bladder before you can take your baby home. A urologist will talk to you about this.

Bowel problems

Sometimes the nerves that make the bowels move are weak or not working. The nurse will be assessing how well your baby’s bowels move. The nurse can teach you ideas to help your baby’s bowels to move better.

Hydrocephalus

After their back surgery, babies with spina bifida often have extra cerebrospinal fluid (CSF), a liquid that nourishes and protects the brain, built up around their brain and spinal cord. This is called hydrocephalus. Hydrocephalus is treated with an operation.

If needed, a tube called a shunt is put into the brain during a second surgery. This tube helps to drain CSF from your baby's head into an area where the CSF is better absorbed, such as the lining of the abdomen (tummy).

Problems with the leg muscles and bones

Sometimes the leg muscles and bones are affected by spina bifida. If your child’s bones have not developed normally, an orthopaedic surgeon will speak to you about correcting this in the future.

Tethered cord

In children with spina bifida, sometimes the spinal cord gets stuck at the defect site. This is called a tethered cord.

There are many resources to help you

There are many resources available to help you and your baby to cope with spina bifida. Please talk to your nurse, nurse practitioner, or social worker to get this information.

Parent of Someone with Spina Bifida Occulta

On carepages.com a mom named Anna had a daughter with spina bifida and was wondering what other parent's opinions were on having their children go through surgeries. This was one ladies response:

"My daughter was born with Spina Bifida Occulta 6 years ago. She was born with Lipomyelomeningocele which is in the category of Occulta. I know how difficult the decision it is to have spinal surgery. Our daughter had her first one at 7 months that took them 6 hours to release her spinal cord. Because we waited, she already was experiencing some nerve damage to her right side. Once those nerves are damaged they are damaged. I can tell you that from experience. We know live in Atlanta and have had two additional surgeries to release tethered cords. Every child responds differently. But, we have never second guessed our decision. Our daughter would have been paralyzed had we waited any longer. Our daughter recovered quickly each time. We have had other challenges pop up but that is apart of the package when you deal with this. I can tell you as much information as you would want to have having been through this three times. Our last spinal surgery was 6 months ago."

All people's experiences are different, but this mom believed that the surgeries helped her daughter to have more physical independence in her life. I just think that modern medicine is such a blessing and am glad it allows for people to have more opportunities in their life.



The information provided was found here: http://www.carepages.com/forums/parenting/topics/21-parents-that-have-children-with-spina-bifida

Spina Bifida Occulta

Spina bifida occulta is also one of the more mild forms of spina bifida that as many as 10 to 20 percent of people may have it. It is usually only found in people once they have an x-ray taken. 

There are different forms of even just spina bifida occulta that can cause problems though these include:

- A spinal cord that is tethered to a benign fatty tumor 

- The end of the spinal cord being too thick

- A fatty lump at the inside end of the spinal cord 

- The spinal cord is split in two...usually by a bone or cartilage

- The spinal canal and the back are connected by a piece of tissue

Signs/symptoms of Spina Bifida Occulta:

(A lot of these problems can occur in people that don't have spine issues as well)

- pain in back or legs

- weakness in legs

- numbness or other changes in feelings in the back or legs

- deformed legs, feet, and/or back

- change in bladder and/or bowel functions

Eighty percent of people with spina bifida occulta will have a superficial sign of having it, such as:

- a hairy patch

- a fatty lump

- a red or purple spot (made up of blood vessles)

- a dark spot of birth mark on their back

- a deep dimple

- an area with less skin color

For all of the information gathered I used the terms that I would understand, they all have their special names, but I thought I would only include the things that made sense to me. 

Information gathered from: http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277205/

Interview of Someone with OSD

Since OSD is an inside deformity it can be sometimes hard for doctors to detect, even with an x-ray. To review the basics of Occult Spinal Dysraphism see my previous blog post.

Gehnnah shared her story of having OSD and her hope for parents who may question if their children have the handicap:

I am 34 years old and was diagnosed on 5/10/12 with spina bifida occulta. I have always had a dimple on my lower back just above the buttox and I have always had lower back pain. My parents unfortunately didn't notice the dimple and for the most part thought that as a kid being outside and playing it'd be normal for me to complain of pain. When I was 12 my mom took me to a doctor for xrays and the doctor told her I needed to see a specialist. She was not able to afford it because my parents had divorced and therefore I have waited suffering in pain my entire life where many occasions of temporary paralysis did occur. I not only have spina bifida occulta, but degenerative arthritis in the thoracic region of my spine accompanied with mild scoliosis. I see a rheumatologist on Tuesday. I hope I have shed some light on some who have seen dimples or abnormalities on their children. They say most will not have symptoms of spins bifida occulta because it's the mildest form of spina bifida but I must say I do not wish the constant pain I feel on anyone ever.

Occult Spinal Dysraphism

Occult spinal dysraphism (OSD) comes with mild symptoms. This form of spina bifida is a closed type where the spinal nerves and or meninges are mixed up in some way with their surrounding structures and this involvement causes complications. This form of spina bifida can be hard to detect and not always has clear complications. This is why it is unclear how many people have it. There is an estimation of 1 in 250 people to 1 in 5,000 people. As science reveals more things this estimation may become more precise.

These are the signs of OSD:
As many as 80% of people with OSD have at least one of these outward signs or herald marks. The signs include:

• A hairy patch in the middle of the lower back
• A fatty lump over the bottom of the spine
• A stork bite or haemangioma (a reddish or purple spot) on the skin
• A dimple or sinus (hole) above the level of the crease in the buttocks (Dimples below the level of the crease are common in newborns and are usually no cause for alarm)
• A pigmented area or birthmark over the bottom of the spine.
• A small tail

OSD can be very complex because it is not just one condition. It represents a number of conditions which can occur separately or in combination. Some of these conditions are:

• A tethered spinal cord where the lower end of the spinal cord is stuck or attached to surrounding bone or other structures. The spinal cord is usually free (to some extent) to move up and down within the spinal canal.
• A lipoma which is a fatty lump whose tissues are often interwoven with those of the spinal cord, making them very difficult to separate. Lipomas can also tether the spinal cord.
• Diastematomyelia where the spinal cord is split in two usually by a piece of abnormal bone or cartilage. This can also tether the spinal cord.
• A dermal sinus which is a connection between the spinal canal and the skin of the back.

All of these conditions can affect the functioning of the spinal cord i.e. its ability to send messages to and from the brain. The cord can become stretched which causes pain and the blood supply to the cells in the spinal cord can be affected with the result that the nerves lose their ability to function properly.

These are complications of people with OSD:
Not everyone with OSD will have complications. Sometimes the onset of signs and symptoms will be so gradual that they may not appear until adulthood. For most though, there will be some indications early in the person’s life that the nerves in the spine are not working as they should.
Some of these are:

• Foot deformity
• Weakness in the legs
• Reduced feeling or numbness in the legs or feet
• Back or leg pain
• Bladder infections
• Bladder incontinence
• Constipation
• Scoliosis or other orthopedic deformities.

All of these symptoms can be caused by conditions other than OSD so it is important to see your doctor for thorough testing and an accurate diagnosis.
It is especially important to seek medical advice where the symptoms are progressing or getting worse. These changes may indicate that the spinal cord is tethered and an operation to untether the cord might be required.

Prevention:
There is no guaranteed prevention, but is has been shown that taking enough folic acid can reduce the risk of neural tube defects in baby by 70%. To help prevent OSD it is recommended to have enough folic acid in your diet one month before conception and all through out pregnancy. The recommended amount is .5 milligrams a day. If  history of neural tube defects is found in either the mother or father's history then it is recommended to have a larger dosage of 4 milligrams a day.

Information for this blog page was received from: http://www.mydr.com.au/babies-pregnancy/spina-bifida-occulta

and also from: Spina Bifida Hydrocephalus Queensland. Spina Bifida Occulta. July 2010. http://spinabifida.org/wp-content/uploads/2010/12/SBO-Booklet.pdf

What is spina bifida?

The definition of spina bifida is "a congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone. It often causes paralysis of the lower limbs, and sometimes mental handicap." (google dictionary) I think it is the weirdest thing, every time I write the words "spina bifida" my computer underlines them in red like I wrote them wrong. I mean, this is something real, it should be saved into the computer writing software or whatever haha.

The Spina Bifida Association (SBA) has a lot of valuable information for me and a whole page on what spina bifida is.

- It is the most common permanently disabling birth defect in the US.

- It happens while baby is in the womb. The babies spinal column does not close all of the way.

- There is not a clear answer of what causes spina bifida. So far the hypothesis is that it is both a combination of genetic and environmental factors that lead to someone being born with spina bifida.

The SBA also answers another one of my questions of...are there different degrees/forms of spina bifida?

Occult Spinal Dysraphism (OSD)
Infants with this have a dimple in their lower back. Because most babies with dimples do not have OSD, a doctor has to check using special tools and tests to be sure. Other signs are red marks, hyper-pigmented patches on the back, tufts of hair or small lumps. In OSD, the spinal cord may not grow the right way and can cause serious problems as a child grows up. Infants who might have OSD should be seen by a doctor, who will recommend tests.

Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm, and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.

Meningocele
A meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.

Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.

above is an illustration of three of the different types of spina bifida from bodydiesease.com

above is one of the less graphic pictures of what spina bifida looks like at birth.

Purpose of Blog

My mom has spina bifida and I feel I should know many things that I have no idea about. For my Exceptional Student: P- Grade 6 I have to do a Higher, Wider, Deeper project. I am going to explore spina bifida, which all I know (or think I know) is that it is a twist in the spine and babies are born with it. I obviously need to learn more about it.
How exactly does one come to have spina bifida? What exactly is spina bifida?
Are there different levels of it?
Are there special things people with spina bifida have to do to take care of themselves?
Do people with spina bifida have a lower life expectancy?
Do people with this disability ever also have mental disabilities?
What is this prenatal surgery I have heard of and can babies now be healed of spina bifida?
Does the government help out with the financial strain of this medical condition?
How does this disability affect families?
How does this disability affect individuals with spina bifida?

I really am interested in all of these questions. Over the next few weeks I'll research the topic and share my findings in my blog with you!