Spina bifida

SPINA BIFIDAFIZI & SYAFIQ

WHAT IS SPINA BIFIDA?

• SPINA BIFIDA IS A BIRTH DEFECT.

• MOST CHILDREN WHO HAVE SPINA BIFIDA DO NOT HAVE PROBLEMS FROM IT.

• IT OCCURS WHEN THE BONES OF THE SPINE (VERTEBRAE) DO NOT FORM PROPERLY AROUND PART OF THE BABY’S SPINAL CORD.

• IT CAN AFFECT HOW THE SKIN ON THE BACK LOOKS. AND IN SEVERE CASES, IT CAN MAKE WALKING OR DAILY ACTIVITIES HARD TO DO WITHOUT HELP.

THE DISEASE CAN BE MILD OR SEVERE.

MILD

• THE MILD FORM IS THE MORE COMMON FORM.

• IT USUALLY DOES NOT CAUSE PROBLEMS OR NEED TREATMENT.

• YOU CAN'T SEE THE DEFECT.

• SO MOST PEOPLE DON'T KNOW THEY HAVE IT UNTIL THEY GET A BACK X-RAY FOR ANOTHER REASON.

SEVERE

THE SEVERE FORMS ARE LESS COMMON. THERE ARE TWO TYPES:

• MENINGOCELE (SAY "MUH-NIN-JUH-SEEL"). FLUID LEAKS OUT OF THE SPINE AND PUSHES AGAINST THE SKIN. YOU MAY SEE A BULGE IN THE SKIN. IN MANY CASES, THERE ARE NO OTHER SYMPTOMS.

• MYELOMENINOCELE (SAY "MY-UH-LOH-MUH-NIN-JUH-SEEL"). ALTHOUGH THIS IS THE MOST RARE AND SEVERE FORM OF SPINA BIFIDA, IT IS THE FORM MOST PEOPLE MEAN WHEN THEY SAY "SPINA BIFIDA." PART OF THE SPINAL NERVES PUSH OUT OF THE SPINAL CANAL, AND YOU MAY SEE A BULGE IN THE SKIN. THE NERVES ARE OFTEN DAMAGED, WHICH CAN CAUSE PROBLEMS WITH WALKING, BLADDER OR BOWEL CONTROL, AND COORDINATION. IN SOME BABIES, THE SKIN IS OPEN AND THE NERVES ARE EXPOSED.

WHAT CAUSES SPINA BIFIDA

• THE EXACT CAUSE OF THIS BIRTH DEFECT IS NOT KNOWN. EXPERTS THINK THAT GENES AND THE ENVIRONMENT ARE PART OF THE CAUSE.

• FOR EXAMPLE, WOMEN WHO HAVE HAD ONE CHILD WITH SPINA BIFIDA ARE MORE LIKELY TO HAVE ANOTHER CHILD WITH THE DISEASE. WOMEN WHO ARE OBESE OR WHO HAVE DIABETES ARE ALSO MORE LIKELY TO HAVE A CHILD WITH SPINA BIFIDA.

WHAT ARE THE SYMPTOMS?

• YOUR CHILD’S SYMPTOMS WILL DEPEND ON HOW SEVERE THE DEFECT IS. WITH A MILD DEFECT, YOUR CHILD MAY HAVE NO SYMPTOMS OR PROBLEMS. OR YOUR CHILD MIGHT HAVE A DIMPLE, A BIRTHMARK, OR A HAIRY PATCH ON HIS OR HER BACK.

• IN SEVERE CASES, YOU MAY SEE NERVES COMING OUT OF YOUR CHILD’S BACK OR SWELLING ON THE SPINE. A CHILD WITH A SEVERE DEFECT MAY HAVE NERVE DAMAGE THAT AFFECTS DAILY LIVING. THE CHILD MAY HAVE LITTLE OR NO FEELING IN THE LEGS, FEET, OR ARMS. AND HE OR SHE MAY NOT BE ABLE TO MOVE THOSE PARTS OF THE BODY.

• CHILDREN WITH A SEVERE DEFECT ARE SOMETIMES BORN WITH FLUID BUILD-UP IN THE BRAIN (HYDROCEPHALUS). THEY MAY ALSO HAVE THIS PROBLEM AFTER BIRTH. IT CAN CAUSE SEIZURES, INTELLECTUAL DISABILITY, OR SIGHT PROBLEMS. SOME CHILDREN ALSO GET A CURVE IN THE SPINE, SUCH AS SCOLIOSIS.

• MANY CHILDREN WHO HAVE SEVERE SPINA BIFIDA DEVELOP AN ALLERGY TO LATEX (A TYPE OF RUBBER).

HOW IS SPINDA BIFIDA DIAGNOSED?

• A PREGNANT WOMAN CAN HAVE A BLOOD TEST (MATERNAL SERUM TRIPLE OR QUADRUPLE SCREEN) AND A FETAL ULTRASOUND TO CHECK FOR SPINA BIFIDA AND OTHER PROBLEMS WITH THE FETUS.

• IF TEST RESULTS SUGGEST A BIRTH DEFECT, SHE CAN CHOOSE TO HAVE AN AMNIOCENTESIS. THIS TEST HELPS CONFIRM IF SPINA BIFIDA EXISTS. BUT THE TEST ALSO HAS RISKS, SUCH AS A CHANCE OF MISCARRIAGE.

• AFTER BIRTH, DOCTORS CAN TELL IF A BABY HAS SPINA BIFIDA BY HOW THE BABY’S BACK LOOKS. THE DOCTOR MAY DO AN X-RAY, AN MRI, OR A CT SCAN TO SEE IF THE DEFECT IS MILD OR SEVERE.

HOW SPINDA BIFIDA IS TREATED?

• TREATMENT DEPENDS ON HOW SEVERE THE DEFECT IS. MOST CHILDREN WITH SPINA BIFIDA HAVE ONLY A MILD DEFECT AND MAY NOT NEED TREATMENT. BUT A CHILD WITH A SEVERE DEFECT MAY NEED SURGERY. IF YOUR CHILD HAS PROBLEMS FROM NERVE DAMAGE, HE OR SHE MAY NEED A BRACE OR A WHEELCHAIR, PHYSICAL THERAPY, OR OTHER AIDS.

THERE ARE THINGS YOU CAN DO TO SUPPORT YOUR CHILD

• HELP YOUR CHILD BE ACTIVE AND EAT HEALTHY FOODS.

• GO TO ALL SCHEDULED DOCTOR VISITS.

• TALK TO YOUR DOCTOR ABOUT EARLY TREATMENT. MOST CHILDREN WHO HAVE SPINA BIFIDA AND THEIR PARENTS WORK WITH PEOPLE SUCH AS PHYSICAL THERAPISTS OR OCCUPATIONAL THERAPISTS STARTING SOON AFTER THE BABY IS BORN. THERAPISTS CAN TEACH PARENTS AND CAREGIVERS HOW TO DO EXERCISES AND ACTIVITIES WITH THE CHILD.

• KEEP YOUR CHILD AWAY FROM LATEX PRODUCTS IF HE OR SHE HAS A LATEX ALLERGY.

• IF YOUR CHILD HAS BLADDER CONTROL PROBLEMS, HELP HIM OR HER USE A CATHETER EACH DAY. IT CAN HELP PREVENT INFECTION AND KIDNEY DAMAGE IN YOUR CHILD.

• IF YOUR CHILD HAS LITTLE OR NO FEELING IN THE LIMBS AND CAN'T SENSE PAIN, HE OR SHE MAY GET INJURED AND NOT KNOW IT. YOU MAY NEED TO CHECK YOUR CHILD’S SKIN EACH DAY FOR CUTS, BRUISES, OR OTHER SORES.

• WHEN YOUR CHILD IS READY TO GO TO SCHOOL, TALK WITH TEACHERS AND OTHER SCHOOL WORKERS. PUBLIC SCHOOLS HAVE PROGRAMS FOR PEOPLE AGES 3 THROUGH 21 WITH SPECIAL NEEDS.

• TAKE GOOD CARE OF YOURSELF SO YOU HAVE THE ENERGY TO ENJOY YOUR CHILD AND ATTEND TO HIS OR HER NEEDS.

• ASK FOR HELP FROM SUPPORT GROUPS, FAMILY, AND FRIENDS WHEN YOU NEED IT.

HOW CAN YOU PREVENT SPINA BIFIDA?

BEFORE AND DURING PREGNANCY, A WOMAN CAN HELP PREVENT SPINA BIFIDA IN HER CHILD.

• GET PLENTY OF FOLIC ACID EACH DAY. EAT FOODS RICH IN FOLIC ACID, SUCH AS FORTIFIED BREAKFAST CEREALS AND BREADS, SPINACH, AND ORANGES. YOUR DOCTOR MAY RECOMMEND THAT YOU ALSO TAKE A DAILY VITAMIN WITH FOLIC ACID OR A FOLIC ACID SUPPLEMENT.

• IF YOU TAKE MEDICINE FOR SEIZURES OR ACNE, TALK WITH YOUR DOCTOR BEFORE YOU GET PREGNANT. SOME OF THESE MEDICINES CAN CAUSE BIRTH DEFECTS.

• DON'T DRINK ALCOHOL WHILE YOU ARE PREGNANT. ANY AMOUNT OF ALCOHOL MAY AFFECT YOUR BABY’S HEALTH.

• DON'T LET YOUR BODY GET TOO HOT IN THE FIRST WEEKS OF PREGNANCY. FOR EXAMPLE, DON'T USE A SAUNA OR TAKE A VERY HOT BATH. AND TREAT HIGH FEVERS RIGHT AWAY. THE HEAT COULD RAISE YOUR BABY’S RISK FOR SPINA BIFIDA.

THANK YOU SPINA BIFIDA – FIZI & SYAFIQ