Resources for those with Spina Bifida

Spina Bifida can be emotional, physically, and financially taxing. There are a lot of aids that I could find on the internet and support groups. I'll list their links on this page and a short description of what each is.

1. Support Groups & Play Groups; on this page there is a list of support and play groups for those with/or with children who have spina bifida. There are multiple cities and states listed. See if yours is there :)

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8647429/k.9E6C/Support_Groups__Play_Dates.htm

2. Get Your Questions Answered: on this page there is a question form or a number you can call. These people will answer your questions and support you in your quest for finding the truth.

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8271987/k.9F92/Ask_the_Expert/apps/ka/ct/contactus.asp?c=evKRI7OXIoJ8H&b=8271987&en=clKNL3OLJbKWKdPOJaJTL9NYJpLXLhP1JjJVJiP6IzH

3. Learn about becoming an advocate for spina bifida: this page contains helps on knowing how to become an advocate

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8029661/k.9C75/SPEAK_for_SB.htm

4. Financial Help: on this page is a LONG list of financial aid to help pay for the costs of those with spina bifida.

http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.printer.friendly&id=10

5. Online Chat/Support Group: on this page you can help others, or ask questions

http://spina-bifida.supportgroups.com/

6. Chad's blog; he has lived with spina bifida and shares some of his insights. It is up to date and a good read.

http://iammorethanjustdamagedgoods.com/

Being Raised by a Mother with Spina Bifida

     My mom has spina bifida, but that has not impacted her on being a good mother to me one bit. As a mom, I think she spoiled me. I do not remember having many chores. Looking back on it I really should have helped her out. I think her disability forced her to be creative in many situations. For example, when she does laundry she uses prongs to be able to reach the socks in the bottom of the washer to be able to get them into the dryer. She also places laundry baskets in front of her to be able to take them from one place to another rather than carrying them. To vacuum she puts on her wheelchair breaks, vacuums a small section, moves and repeats. There are so many things I could have done to help that would have been much easier for me to do than it is for her to do. My mother is not one to complain though.
     Having spina bifida, I can tell, gets hard on her sometimes. There were also occasions where she had difficulties with bladder and bowel control, which were out of her hands. I could see how sometimes it was very embarrassing and sometimes frustrating for her, but I always tried to make her feel okay and loved. It was sad for me to see her struggle in these moments. Especially once when my dad got frustrated/tired. I can understand that it would have to be hard on him as well though.
     There was also the difficulty of places that weren't accommodated for people that were in wheelchairs. The places without ramp entrances, handicap bathroom stalls, sidewalks without a curb entrance, places without sidewalks, and many others. It was even hard sometimes at places with the accommodations, it is hard to keep a place maintained for those in wheelchairs. Once, at my sisters parent teacher conference at the High School, my mother was just strolling along and there was an uneven differences in height in the side walk and it stopped her wheelchair abruptly and the impact caused her to fall out of her wheelchair. She ended up landing on her nose and had a large cut. That got me mad and for a while I was mad at the high school, but it just goes to show that accidents happen that are unexpected, and they do happen to everyone.
        I once asked my mom if she was ever sad that she was in a wheelchair and she was honest with me. She said, "When I was younger I used to get mad a lot. I would wonder why I wasn't like the other kids. I would focus on the things that I couldn't do. As I got older though I came to understand how that didn't help me. I started to focus on what I could do. I also never thought I would get married, or that no one would want to marry me, but then I met your dad."
     I am so grateful for my mom. She is a wonderful, beautiful, amazing woman. Nothing stops her. She is still human though, but a very special one to me and I will always hold her dear to my heart.


A picture of my mom and I on my wedding day. I love you Momma.

Spina Bifida and Pre Natal Surgeries

It has not been proven that pre natal surgeries are best for babies with spina bifida. Many have come to believe this though. There is a group called MOMS, which stands for the Management of Myelomeningocele Study. This group is currently doing research to discover whether pre natal surgeries are actually more effective than post natal surgeries for children with spina bifida. They have not yet released their findings, but here is what they have to say about their study:

Background of Management of Myelomeningocele Study (MOMS)  MOMS is a research study designed to compare two approaches to the treatment of babies with spina bifida: surgery before birth (prenatal or fetal surgery) and surgery after birth (postnatal surgery). Spina bifida is a complex birth defect in which a portion of the spinal cord and associated nerves as well as the surrounding spinal bones and overlying muscle and skin do not fully develop. At birth the incompletely developed portion of the spinal cord protrudes through the open bones and skin. The incomplete development of the spinal cord can occur anywhere along its length, from the neck to the lower back and results in a variety of medical problems. One of the most common and important conditions associated with spina bifida occurs because the brain is positioned further down into the upper part of the spinal canal (neck area) than it should be. This abnormal positioning of the brain is part of what makes up a condition called the Arnold Chiari II malformation. This malformation leads to blockage of the normal flow of spinal fluid causing it to collect in the fluid cavities of the brain (ventricles). The condition of over- filled ventricles is called hydrocephalus.  Since the 1930's, the first step in the treatment of babies with this condition has been to surgically close the opening in their back within a few days of birth. The surgery puts the tissues back in their normal position and prevents further damage to and infection of the nervous tissue, but DOES NOT restore function to the already damaged nerves. The second step is usually placement of a thin tube called a shunt within the ventricles which allows for drainage of the excess fluid and relieves undue pressure on the brain. A shunt usually passes under the skin from the head into the abdomen.  Over the years, doctors have noticed that nerve function in babies with spina bifida seems to worsen throughout pregnancy. Often movement in the legs and feet which can be seen by sonogram early on is not seen later in the pregnancy. This suggests that there is ongoing damage to the open portion of the spinal cord, possibly from contact with amniotic fluid. In addition, both animal and human studies have shown that the ability of the body to repair damaged nervous tissue is best in young individuals. Because of these considerations, doctors have been working on ways to close spina bifida defects as early as possible.  In 1994 doctors began trying out various methods for closing spina bifida defects while the baby is still in the mother's womb. Since that time, many improvements have been made in the procedure. It is still not known, however, whether it is better to operate on a baby with spina bifida before or after it is born. MOMS is designed to answer that question. The National Institute of Child Health and Human Development (NICHD), a part of The National Institutes of Health (NIH), has funded this study to compare how babies who have prenatal surgery do compared to those who have postnatal surgery. There are three participating MOMS Centers: the University of California at San Francisco in San Francisco, California, The Children's Hospital of Philadelphia in Philadelphia, Pennsylvania and Vanderbilt University Medical Center in Nashville, Tennessee. The study will be coordinated by the Biostatistics Center of the George Washington University in Rockville, Maryland. The goal is to find out if either treatment is better for the baby. [Back to Top] Clinical Trials -Overview of a clinical trial A clinical trial is a strictly controlled study of new therapies and treatments which is done on human beings. Clinical trials can be used to look at the effectiveness and safety of a wide variety of things such as new medications, therapies or types of surgery. In this study we are comparing two approaches to the treatment of babies with spina bifida: surgery before the baby is born (prenatal or fetal surgery) and surgery after the baby is born (postnatal surgery). A clinical trial is done when it is not known which treatment is better. -Steps to ensure fair comparison of two types of treatment Several steps are taken to be sure that the two types of treatment under study are judged fairly. Clinical trials are usuallyrandomized. This means that neither the doctors or other staff involved in the study nor the study participants have any control over which treatment group an individual is assigned to. In addition, clinical trials are usually blinded. This means that key personnel involved in evaluating the results do not know which treatment was received by a participant. In this study the participants and the doctors performing the surgery will know whether the woman had surgery before or after delivery, but the specialists who evaluate the progress of the babies will not.  -Safety Concerns Safety of study participants is always the top priority. Before a clinical trial can begin, the study goals and design are carefully reviewed by a special committee made up a wide variety of individuals including doctors, nurses, social workers, ethicists, community members, and clergy. This committee is called the Institutional Review Board (IRB). No one associated with a specific clinical trial can be on the IRB which reviews that study. IRBs from each MOMS Center and the Biostatistics Center had to approve the MOMS study. Prospective study participants must always be fully informed about the study goals and design, as well as possible risks and benefits, and sign an informed consent form before being accepted into a clinical trial.  [Back to Top] Overview of the Study MOMS is a long-term study which began in early 2003. Two hundred women 18 years of age or older who are carrying babies with spina bifida will be enrolled in the study. They must enroll by their 25th week of pregnancy. Half of the women will be assigned to have prenatal surgery and half to have postnatal surgery. This is a randomized trial meaning that neither the doctors at the MOMS Center nor the women who participate will have a say in whether or not they are assigned to surgery before delivery or surgery after delivery. The prenatal surgery will be done at one of three MOMS Centers between the 19th and 25th week of pregnancy. Women in both groups will deliver their babies at their assigned MOMS Center by C-section around the 37th week of their pregnancy. Women assigned to the prenatal surgery group will stay in lodging near their MOMS Center from the time they are accepted into the study and have the prenatal surgery until they deliver their baby by C-section around the 37th week of their pregnancy. Women assigned to the postnatal surgery group will return home after they are accepted into the study and will be cared for by doctors in their area until they return to the MOMS Center at 37 weeks for delivery by C-section and for postnatal closure of their baby's spina bifida defect by the MOMS team neurosurgeon.  [Back to Top] Process for inclusion in the study  -Initial ScreeningInterested women or their doctors should call the Study Coordinator at the Biostatistics Center of the George Washington University, to obtain information and to have a preliminary assessment of eligibility. The Study Coordinator can be reached at 1-866-ASK-MOMS. Those who are interested in pursuing enrollment in the study will be sent a package of information about the trial and will need to sign an informed consent form to allow the Study Coordinator to evaluate their medical records and speak with their doctor, if necessary. If after reviewing the medical record eligibility is confirmed, they will be assigned to one of the three participating MOMS Centers. Women will not be able to select which MOMS Center they will be assigned to. Convenience to the women as well as the need to evenly divide the participants between the three centers will be considered when making MOMS Center assignments.  -Final Screening The next step after the initial screening process is for the woman to contact her assigned MOMS center to arrange a date for an in-depth evaluation. The study will pay for the woman and the baby's father or another support person to travel with the mother to the MOMS Center and meals and lodging will be paid by the study while they are at the MOMS Center. The evaluation is quite extensive and includes:    A complete obstetrical ultrasound (sonogram)  An MRI of the of the fetus's head  A physical examination of the mother and clearance for surgery by an anesthesiologist and an obstetrician  A social work evaluation  Teaching about spina bifida and the medical problems associated with this condition  Teaching about what the prenatal surgery will involve, what to expect after surgery and what type of care will be needed between the prenatal surgery and delivery  A review of medications which may be necessary before, during and after the prenatal surgery  A thorough review of the risks and benefits of participating in the study  If the evaluation confirms that a woman is eligible and she chooses to participate in the study, she will be asked to sign an informed consent form and she and the father will complete a brief psychosocial questionnaire.  [Back to Top] Randomization and Surgery This is a randomized study. Assignments to have surgery before birth or surgery after birth will be made by a central computer system. Neither the MOMS Center staff nor the woman will be able to choose which group she will be assigned to. As soon as the evaluation and psychological tests are completed, random assignment to the prenatal or postnatal surgery group will be made. -Prenatal Surgery Group Individuals assigned to have surgery before birth will be scheduled for surgery within one to three days of their enrollment. The surgery must be done before the end of the 25th week of pregnancy because there is some information suggesting that the earlier in pregnancy it is done, the better the results may be. Because the surgery will be done so soon after the assignment is made, individuals will not be able to return home once the assignment to prenatal surgery is made. They should come to the MOMS Center prepared to stay until they deliver, around 37 weeks of pregnancy.  -Postnatal Surgery Group  Individuals assigned to the postnatal surgery group will return to their home community for care by their doctors. At 37 weeks, if the baby has not yet been born, the woman and her support person will return to their MOMS Center for delivery by C-section. Babies will have their spina bifida defects closed when they are medically stable, usually within 48 hours. Infants with spina bifida are usually in the hospital for one to two weeks after birth while they are stabilized, have their spina bifida defect closed and undergo a thorough medical evaluation.  [Back to Top]   Risks of Prenatal Surgery -Possible Risks to the Mother   Wound infection after the fetal surgery.  Intrauterine (in the uterus) infection. If this occurs the baby will need to be delivered right away.  Amniotic fluid leak. If it occurs, the mother will probably need to be admitted to the hospital to be treated with bed rest and IV (intravenous) fluids. She may need to stay in the hospital until delivery.  Loss of ability to have more children.  Significant bleeding during the fetal surgery.  Side effects from any medications needed before, during, or after surgery. Side effects depend on the specific medications used.  Complications from general anesthesia. This risk is no higher than for any other surgery requiring general anesthesia.  Effect on future pregnancies and deliveries. It is recommended that mothers do not labor during future pregnancies and deliver by C-section instead.  Psychological stress. There are risks of depression in both groups of women. There is the potential for placing a psychological burden on the family because of the demands of the study, including having to stay away from home and the need to travel to the MOMS Center several times.  -Possible Risks to Fetus or Baby   Further damage to the spinal cord and nerves from the prenatal surgery.  Prematurity. Fetal surgery can result in early delivery. The earlier the baby is born, the higher the chance that they will have problems associated with prematurity.  Membrane separation. The fetal surgery may cause the tissues surrounding the baby and amniotic fluid to separate from the uterus causing early delivery or interference with the blood flow to some part of the baby such as an arm or leg.  [Back to Top] Follow-up Once stable, infants will return to their home communities for follow-up by their regular doctors. In addition to care by a pediatrician or family practice doctor, enrollment in a program specializing in the care of children with spina bifida is strongly encouraged. MOMS Center staff will help you locate the program nearest your home. Children and their parents will return to their assigned MOMS Center at one year and two and a half years of age for evaluation. Motor function and developmental progress will be checked as well as bladder, kidney and brain development. This long term follow-up data will enable us to determine whether the outcome is better with prenatal or postnatal surgery. Follow-up assessments will be done by a team of specialists who will not know whether the child had prenatal or postnatal surgery.  Again, all travel, lodging and meal costs related to the follow-up visits will be covered by the study.

Spina Bifida Myths

Many babies born with spina bifida are stillborn or do not survive early infancy.   Actually, the chances that a fetus with an isolated neural tube defect (spina bifida and no other problems) will be stillborn is 5% or less. It is difficult, however, to be precise when discussing the chances that a child born with spina bifida will not survive the first weeks or months of life because treatment of this condition is constantly improving and people with spina bifida are living longer, healthier lives. In addition, some babies with spina bifida do have other medical problems such as a heart defect or a problem with their chromosomes which may cause additional medical complications. Information published by the Centers of Disease Control and Prevention shows that from 1989 through 1994 (the most recent years for which information is available) 91% of babies born with spina bifida survived the first year of life. In comparison, for 1979-1983 that figure was 82.7% and for 1984-1988 it was 88.5%. These figures are for all babies born with spina bifida, even those with additional medical problems. Individuals with spina bifida die at a young age.   Again, it is difficult to give exact information when discussing the life span of people with spina bifida, primarily because of the continuous improvements in treatment which have greatly extended their life expectancy. In addition, they must be followed for many many years in order for us to know how those individuals do. This is difficult because it requires a great commitment in terms of time and financial resources for both the doctors and their patients and few such reports are available for review. One study published in 2001 looked at survival in children with spina bifida who were born between 1975 and 1979. In that group of 118 children, 76% were alive at 20-25 years of age. The most common cause of death was an unrecognized problem with function of the shunt. Remember, however, that treatments have continued to improve since these children were born. At this time we cannot be more specific than to say that most children born with spina bifida will survive at least into early adulthood.[Back to the top] Most children with spina bifida are severely retarded   Children with spina bifida are all individuals and cover the usual broad spectrum of human development and achievement. While factors such as a shunt infection or an episode of respiratory arrest (stopping breathing) can significantly adversely affect the intellectual outcome of children with this condition, the average IQ of a child with spina bifida is 80-85, which is in the low normal range. Information on one group of 173 children with spina bifida who were born between 1963 and 1971 showed that 63% with shunts had an IQ above 80, while in those children without shunts 87% had an IQ above 80. Of course these are averages, some of them had an IQ that was higher and some had an IQ that was lower. Regardless of IQ, most children with spina bifida do have learning problems and many require some special education services. Below is a table which will help put these IQ numbers in perspective. Classification IQ Score Very Superior 130 and above Superior 120 - 129 High Average 110 - 119 Average 90 - 109 Below Average 80 - 89 Borderline 70 - 79 Extreamly Low 69 and below When the spina bifida defect is covered by a sac the prognosis is better (or worse) than if there is no sac.   Actually, it makes no difference whether or not a sac covers the myelomeningocele defect. The most important factor in determining how much paralysis there will be is where on the spinal cord the opening begins. Since normal nerve development and function do not occur at or below the level of the open spine, the higher up the spinal cord the spina defect occurs, the greater the degree of paralysis. For example, if the opening starts at the waist, more of the body will be paralyzed or partially paralyzed than if it starts below that level. In addition, it is important to remember that when a spina bifida defect is covered by a sac made up of the thin tissues which normally enclose the spinal cord (these tissues are called the "meninges") but not by skin, the defect is considered to be open, not closed, and will need to be treated surgically soon after birth. Only a defect covered by skin is considered closed. It is possible that some of the confusion stems from the fact that there is a much rarer condition called a meningocele where only the coverings of the spinal cord protrude from the back and the spinal cord itself is intact and complete. However, a meningocele is a totally different condition than the type of spina bifida which occurs when the spinal cord has not completed its development.[Back to the top] If the fetus has the "lemon sign" the baby will be born with a lemon-shaped head.   The lemon sign is something which is seen in a fetus during a prenatal ultrasound examination. The lemon sign is a descriptive term which refers to the fact that the front of the skull loses its normal round shape and appears flattened and sometimes even inwardly depressed. Thus, the head has the overall shape of a lemon - generally oval but somewhat pointed in the front, in the area of the forehead. Several explanations have been proposed for the presence of the lemon sign, but at this time the reason why a particular baby may have the lemon sign is not known. What is known is that the lemon sign almost always disappears in the third trimester of a pregnancy, with the skull taking on the more usual rounded shape. Babies with spina bifida in whom the lemon sign is seen during a prenatal ultrasound are NOT born with a marked point at the top or front of their head. Prenatal diagnosis (testing done before your child is born) is only important for families who will terminate the pregnancy if a problem is found.    There are many valid reasons for having prenatal testing to determine if the fetus has any diagnosable abnormalities; terminating the pregnancy is only one such reason. A crucially important reason is to give parents time to learn about their child's condition and to find medical facilities where their child will be able to get the specialty care they will need. In the past, it was usually in the delivery room where parents found out that their baby had an abnormality. They were therefore placed in the very difficult position of trying to rapidly educate themselves about a complex medical issue and make on the spot decisions about where to get care for their child. Thankfully, because of our ability to diagnose spina bifida prenatally in most cases, it is rare for parents to find themselves in this situation today.[Back to the top] When hydrocephalus (enlarged fluid cavities within the brain) is seen on ultrasound (sonogram) the overall prognosis for the child is much worse than if it is not seen.   Actually, the vast majority of infants with spina bifida will develop hydrocephalus, either during the pregnancy or soon after the spina bifida defect is closed after birth. The presence of hydrocephalus in a fetus or infant with spina bifida does not make the case particularly unusual or severe.Most children with hydrocephalus will require treatment with a shunt (a thin flexible, straw-like device which is implanted in the fluid cavities of the brain to control the build-up of cerebrospinal fluid). A small percentage of children with an open spina bifida will not require a shunt. The most important thing in determining how a child with spina bifida will do in life is where the spina bifida is located along the spine.   The location of the spina bifida in the back does determine how much paralysis there will be in the legs and feet. The higher up the spinal cord the spina bifida starts, the greater the degree of paralysis. However, it a mistake to consider only the level of the spina bifida and resulting paralysis when thinking about how an individual will do in life. Many great men and women have been paralyzed and have used wheelchairs to get around. Although they did not have spina bifida, President Franklin Roosevelt and renowned scientist Steven Hawkins are two such individuals. Intellectual strengths and the ability to find a place in life where the person is happy and functioning at their best also play enormously important roles. It is not possible to predict how an individual child with spina bifida will do in life (just as it is not possible to predict that for any child), but parents can make an enormous difference. They can do this by working with educators to find the educational program that best meets their child's needs and by letting their child grow, mature and accept responsibilities commensurate with their mental and physical abilities. It is natural to want to protect a child from disappointment and possible failure, but we all need to make mistakes and to learn from them. An individual who is not allowed to learn from experience may never fulfill their potential. These myths and debunking of the myths were found on http://www.spinabifidamoms.com/english/myths.html Another myth that I had myself was that people with spina bifida have a shorter life expectancy. This is not true and they often go on to live full lives when they have a good diet, exercise, and proper medical attention I am living proof that they are also able to give birth. I do not know if it is the same in others' situations.

Spina Bifida Myelomeningocele

Spina bifida myelomeningocele. That last word is a handful and it is pronounced
 my-ello-men-ing-go-seal
To review, 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.

There are so many different levels of spina bifida and the nerve damage caused also ranges. My mother has spina bifida and she cannot walk, but there are others that can use crutches, and some people with spina bifida can walk and run just fine.

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