Can people with spina bifida have kids

Living With Spina Bifida (Young Adults)

• Physical Health - What to Expect
• Sexual Health and Sexuality
• Mental Health and Well-Being
• Getting Around

• Looking to the Future
• Finding Support
• References

The transition from adolescence to adulthood can be a time of growth and success, as well as difficulty. For people with spina bifida, it is especially important to begin planning for transitions in childhood so they are able to lead independent lives as adults.

Young adults affected by spina bifida can face challenges, such as:

• Learning to take care of their own health needs.
• Working.
• Going to school.
• Volunteering.
• Finding and using transportation.
• Living outside their parents’ home.
• Developing healthy relationships.

Physical Health – What to Expect

Young adults with spina bifida can provide or manage much of their own care. Some examples include:

• Finding new doctors that care for adults affected by spina bifida.
• Obtaining medical insurance if they are no longer covered under their parents’ health plan.
• Talking to health care professionals about their condition.
• Making doctor appointments.
• Ordering or reordering medications and supplies.
• Seeking immediate medical help when needed.
• Managing their own bathroom plan.

The Spina Bifida Association has created materials to help patients maintain healthy skin.
Did You Look? Healthy Skin Starts With You!external icon

Mobility and Physical Activity

Regular physical activity is important for all people, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for people with spina bifida to be active. For example, they can:

• Roll or walk in the neighborhood.
• Lift weights.
• Participate in sports activities (for example, swimming) and teams for people with or those without disabilities.

For more information, please visit the following websites:

National Center on Health, Physical Activity and Disability (NCHPAD)- Spina Bifida Guidelinesexternal icon

Obesityexternal icon

Disabled Sports USAexternal icon

Sexual Health and Sexuality

It is important that young adults with spina bifida talk with their healthcare professional about sexuality and sexual functioning, contraceptives, and reproductive concerns.

Spina bifida causes nerve damage that can affect sexual functioning. Most people with spina bifida are fertile, and can have children.

Health care for men with spina bifidaexternal icon

Health care for women with spina bifidaexternal icon

Folic Acid

Folic acid is very important. All women who can get pregnant should be sure to take 400 micrograms (µg) of folic acid every day, even if they aren’t planning a pregnancy anytime soon. If a woman has enough folic acid in her body before and during pregnancy, it can help prevent major birth defects of the baby’s brain and spine―including spina bifida.

A woman with spina bifida who is planning to get pregnant should talk with her doctor about getting a prescription to take 4,000 µg (4.0 milligrams) of folic acid one month before pregnancy and during early pregnancy.

For more information, please visit the following websites:

Healthy Pregnancy

Folic Acid

Mental Health and Well-Being

Overall mental health and well-being are very important for everyone. Mental health is how people think, feel, and act as they cope with life. To be at their best, people need to feel good about their lives and value themselves.

Young adults with spina bifida might feel isolated from others, or have low self-esteem. This can cause them to become depressed. There are different ways to treat depression. Exercise can be effective. Counseling or medication also might be needed.

Everyone feels worried, anxious, sad or stressed sometimes. If these feelings do not go away and they interfere with daily life, adults should talk with other people, such as a family member or health care professional, about their feelings.

If you have questions about mental health or where to get mental health services, your doctor or a licensed mental health professional in your community may be able to answer those questions or refer you to someone who can. A nearby health facility or your state mental health agency also may be able to help.

For more information, please visit the following websites:

Depression and Anxiety in Individuals with Spina Bifidaexternal icon

Getting Around

To be independent, young adults need to be able to find and use transportation safely. Many young adults with spina bifida have issues that can affect safe driving. A driver rehabilitation evaluation specialist can identify whether modifications to the car would make it accessible for a young adult with spina bifida.

Young adults can also learn to find and safely use buses, cabs, and ride-hailing services. As they plan for employment, college, or vocational training, young adults will need to find and use transportation safely.

Being safely mobile in their homes and communities will help young adults with spina bifida be more independent.

Looking to the Future

Many young adults are still getting used to being independent. They may have recently started working, volunteering, going to college, or living independently.

Continuing to plan for the future is very important. This includes setting goals and making a plan for how to achieve them. Unexpected problems can be challenging and it’s important for young adults to not give up and to keep working towards their goals. Sometimes the goals need to be modified, or they take longer than planned. Either way, planning now will help young adults with spina bifida continue to succeed.

Finding Support

Finding support and resources in the community can increase a young adult’s confidence in managing spina bifida, enhance their quality of life, and meet the needs of all family members.

Parents of young adults with spina bifida may want to talk to one another. One parent might have learned how to address some of the same concerns another parent has. Often, parents of other young adults with special needs can give advice and share resources about what’s worked for them.

Remember that the choices of one family might not be best for another family, so it’s important that parents understand all the options and discuss those with the appropriate healthcare professional.

• A Spina Bifida Association (SBA) Chapterexternal icon is a great place to connect with other families. The SBA website can provide information on how to find a local chapter.
• Connect online with others.external icon
• National Resource Centerexternal icon Get information and find clinics or health care providers who are experts on spina bifida.

References

Sandler, Adrian, M.D.(2004). Living with Spina Bifida: A Guide for Families and Professionals. University of North Carolina Press: Chapel Hill.

Merkens, Mark J., M.D. and the Spina Bifida Association’s Professional Advisory Council (2006). Guidelines for Spina Bifida Health Care Services Throughout the Lifespan. Third Edition. Spina Bifida Association.

Pregnancy in women with Spina Bifida

Many women with spina bifida will have a safe and successful pregnancy, but you will probably need to plan more carefully than other women. We hope this information will give you an idea of how to get ready, and what to expect, if you decide to try for a baby.

As a general rule, if you or your partner has spina bifida or you have already had a child with spina bifida, you have a 1 in 25 chance of having another baby with the condition. You may wish to see a genetic counsellor to discuss the chances of a pregnancy being affected by spina bifida or another neural tube defect. Your GP can refer you to a genetic counsellor.

• Before and during pregnancy
• Preparing for birth
• Going home with your baby

Before and During Pregnancy

Before you start your other preparation, let the doctors involved in your care know about your plans, as your care may need to change before and throughout your pregnancy.

If you choose to try to lower the chance of your baby having spina bifida or anencephaly (a fatal condition where the baby’s brain doesn’t develop), you are advised to take 5mg of folic acid (available on prescription) for around 8 weeks before you start trying to conceive. Shine also suggests you take vitamin B12, 2.5mcg for around 3 months before conceiving. This will be included in pre-pregnancy multivitamins, and will be especially important if you’re vegetarian or vegan.

Epilepsy

If you take epilepsy medication, let your neurologist know. Some epilepsy medication, such as sodium valproate are associated with several health problems in babies, and you may be advised to change medication. This would need to be done gradually, under close supervision to make sure your epilepsy is well controlled, and this can take many months to do safely. Your medication dose may need to be changed during pregnancy,as your blood volume increases.

Weight

You are advised to be at a healthy weight before you start trying for a baby.

A BMI between 18.5 and 24.9 is considered healthy, which is around 9 stones for a woman of 5 feet 5 inches. Being under- or overweight can result in health problems for you and your baby, and it could take you much longer to fall pregnant.

Kidneys

If you have any renal problems, you would need to take advice from your Urologist or Nephrologist to see whether pregnancy would be safe for you. As pregnancy goes along, your blood volume will increase about 30%, and all this extra blood needs ‘cleaning’ by the kidneys. If you’ve never had kidney problems, ask your GP for a blood test just to check everything is still OK.

Bladder

If you have a urine infection (UTI) once you start trying, stop trying that month and use a condom until your next period, especially if you need to take trimethoprim. If you take prophylactic antibiotics to prevent UTIs, talk to your Urologist about whether it will be safe or advisable to stop. Trimethoprim is associated with birth conditions, including spina bifida. If you take medication for an overactive bladder, talk to your Urologist. Just before and during the first few months of pregnancy, you’ll usually be advised to stop your medicines. If you

have an overactive bladder, you will probably find increased leakage, frequency and urgency of passing urine, especially as your pregnancy progresses. You may need to wear continence pads if you are leaking large amounts. For some of you, it could lead to reflux back to the kidneys, so you might need more regular scans to check. Some women find it gets much harder to catheterise in the last few months of pregnancy.

Ultrasound scans

Most scans give the best view of the baby when your bladder is full, as the full bladder ‘lifts’ the uterus above the pelvic bones. If you choose to have the ultrasound scans you’re offered, explain if you can’t fill your bladder very much. There’s no point drinking more water if it won’t improve the scan.

Bowels

Most women, with or without spina bifida, find they get more constipated during pregnancy. Increasing water intake, eating plenty of fruits, vegetables, and pulses (lentils, peas and beans) can help but you may need to take a laxative, even if you don’t usually need to, so check with your GP what would be best. Keep as active as you can to help things moving along.

Shunt

Many women with shunts have completely routine pregnancies, with no shunt complications at all. If you need a Caesarean delivery, make sure your Obstetric team know about your shunt. They might want to talk with a Neurosurgeon before your delivery

Back

If you have curvature of your lower spine, it can mean less space for your baby to grow, and you might need extra monitoring in the later months of your pregnancy. If you have a curvature of the top part of your back, it can make it harder for you to breathe, especially as the baby grows up under your ribs. Some women need to rest, and this may even include bed rest, in the last few months. Occasionally, it will be best to deliver your baby a little early.

Pelvis

Some women with spina bifida have changes to the shape of their pelvis which can mean a Caesarean would be safer than delivering vaginally. Your midwife should be able to advise you on this. You might want a scan at around 36 weeks, to check how big your baby is, and whether this affects your delivery plans. Very small as well as very large babies can be harder to deliver vaginally

Balance

As your pregnancy progresses, you gain weight and your shape changes, balance may be a problem especially if you normally use calipars and or crutches. You may have to use a wheelchair for a period of time.

Pain

If you usually take pain medication, you will usually be advised to stop before and during the first few months of pregnancy at the least. This might be very difficult, and some medicines should be reduced slowly over several weeks to prevent withdrawal symptoms. Some women find warm baths and yoga techniques/mindfulness helpful, but often it’s a case of ‘getting through it’. You might have more pain, or new pain such as symphysis pubis dysfunction.

Click here for more information about pelvic pain in pregnancy

You might experience more back pain, as your posture changes and you’re carrying more weight, and for some of you, this will not go completely once you’ve had your baby

Preparing for Birth

Before Admission

You may wish to visit the maternity unit to have a look around where you will be giving birth. This will give you an opportunity to familiarise yourself with the facilities, discuss access issues and meet some of the members of staff. During this visit, make the staff aware of any additional equipment you may require such as a pressure relieving mattress, cushion, hoist or other transfer equipment.

Planning for delivery

If your pelvis is narrow, or your abdomen muscles are not strong enough to push, a Caesarean might be a safer option than vaginal delivery. A Caesarean might also save damage to your pelvic floor, which might prevent bladder and bowel leakage later on. However, if possible, a vaginal delivery is the best start for your baby, and you will be able to return to your usual activities sooner than after a Caesarean. If it is decided that a vaginal delivery is best, you may need closer monitoring than other women. It can sometimes be hard to predict how the labour will go and how your spina bifida will affect it, and it’s important that assumptions aren’t made.

Occasionally, it may be possible for women with spina bifida to have spinal analgesia (injections into the back to block pain) but it varies from person to person, as the spina bifida lesion and shape of the bones often stop the analgesic from working. It’s a good idea to ask to talk with an anesthetist at your antenatal appointments well ahead of your delivery, to explore your options for pain relief. Professionals shouldn’t assume that because you have no skin sensation in certain areas, you won’t feel the pain of childbirth!

Going home with your baby

It’s a good idea to get as much in place before you go home, especially if you have a Caesarean, as this will mean driving and lifting would not be advised for several weeks. Cribs that attach to your bed can make it easier to tend to your baby without getting out of bed. Sometimes it is easier to leave your car seat in the car and lift your baby into a carry cot than trying to carry the car seat too.

If you use a wheelchair, you can purchase a lightweight pram that is easy to push, fold and attaches to your wheelchair. An occupational therapist will be able to advise you on suitable equipment to make it easier to care for your baby.

If anyone offers help, accept it in the spirit it’s meant, and give them something to do, especially the mundane chores like laundry. It will help you conserve your energy for your baby. It’s normal to feel exhausted in the early weeks, and it takes time for the hormones to settle. You might feel tearful or sensitive and feel offers of support imply you can’t cope. Mostly people just want to help. If the low mood or tearfulness last longer than a couple of weeks, let your Health Visitor or GP know.

Fetal spina bifida - symptoms, causes, who treats

What should be done to diagnose the causes of spina bifida in a fetus? To solve this problem, the first step for the patient is to make an appointment with an obstetrician-gynecologist.

After the initial examination, the doctor may prescribe additional examinations using:

• ultrasound
• ultrasound brain scan
• computed tomography of the brain or magnetic resonance imaging of the brain
• bladder ultrasound
• ultrasound scan of the kidneys.

Spina bifida is a birth defect in which the baby's spine and spinal cord do not develop properly in the womb, causing damage to the integrity of the spinal column. This pathology of the spine is a type of neural tube defect - the structure that eventually transforms into the brain and spinal cord. The neural tube begins to form early in pregnancy and closes about 4 weeks after conception. In spina bifida, part of the neural tube does not develop or close, resulting in defects in the spinal cord and vertebrae.

Causes of spina bifida

The exact cause of spina bifida is not known, but a number of factors can increase a child's risk of developing the condition.

Folic Acid Deficiency

Folic acid (also known as vitamin B9) is found naturally in certain foods such as broccoli, peas, brown rice, and breakfast cereals. All pregnant women, as well as those planning a pregnancy, are recommended to take a mandatory folic acid preparation. It is estimated that taking this vitamin before conception and during pregnancy can prevent up to 7 out of 10 neural tube defects. It is not clear how folic acid helps reduce the risk of spina bifida, but it is likely necessary for important biochemical reactions in the body.

Family history

The presence of neural tube defects in close relatives increases the chances of having a child with a spinal fissure. Also, if parents previously had a child with this defect, the chances of having other sick children also increase.

Medical factors

Taking certain medications during pregnancy is associated with an increased risk of having a baby with a spina bifida or other birth defects. Valproate and carbamazepine are the drugs most commonly associated with spina bifida. They are often used to treat epilepsy and certain mental illnesses such as bipolar disorder. Doctors will try to avoid prescribing these drugs if there is a possibility that a woman may become pregnant while taking them, but they may still be needed if other alternative methods are ineffective. In this case, the specialist will reduce the dose and prescribe folic acid supplements in a large dose.

Genetic factors

It is very common for a child to have spina bifida in combination with certain genetic diseases such as Patau syndrome, Edwards syndrome or Down syndrome.

Other risk factors

Other risk factors for spina bifida include:

obesity - obese women are more likely to have a child with spina bifida than women of average weight; Diabetes - Women with diabetes may have an increased risk of the defect in their children.

Types of spina bifida

There are several different types of spina bifida:

• myelomeningocele is the most severe form of spina bifida, where a child's spinal canal remains open for several vertebrae, allowing the spinal cord and protective membranes around it to bulge out and form a hernial sac ;
• Meningocele is another serious type of spina bifida in which the protective membranes of the spinal cord protrude outward through the spine, with the spinal cord usually developing normally;
• spina bifida occulta is the most common and mildest form of spina bifida, in which one or more vertebrae are malformed but the gap in the spine is very small; this type of disease usually does not cause serious problems.

Symptoms of spina bifida

Spina bifida can cause a wide range of symptoms, including movement problems, bladder and bowel problems, and hydrocephalus. The severity of the symptoms of this anomaly varies significantly, largely depending on the location of the cleft in the spine. An upper spinal defect is more likely to cause leg paralysis and difficulty with mobility than a cleft in the middle or base of the spinal column.

Movement problems

Most children with spina bifida have weakness or paralysis in the lower extremities. They may need to use ankle supports or crutches to get around, or in severe cases they may need a wheelchair. Paralysis can also cause other related problems. For example, if the leg muscles are not used regularly, they can become very weak (atrophy). Muscles support bones, so muscle weakness can in turn cause dislocation or deformity of joints, bone fractures, bone deformity, and abnormal curvature of the spine.

Bladder problems

Many patients with spina bifida have problems urinating. This is caused by improper formation of the nerves that control the bladder and can lead to:

• urinary incontinence;
• urinary tract infections;
• hydronephrosis - when one or both kidneys increase in size due to the accumulation of urine inside them;
• scarring of the kidneys;
• kidney stones.

Bowel problems

The nerves that run through the spinal cord also control bowel movements and the sphincter muscles that keep feces in the bowel. Many people with spina bifida have little or no control of the sphincter muscles. Bowel incontinence often leads to periods of constipation followed by episodes of diarrhea.

Hydrocephalus

Some children with spina bifida have hydrocephalus, a buildup of excess fluid in the brain that can damage brain matter and cause further problems. Many patients with hydrocephalus will have normal intelligence, although some will have learning difficulties such as:

• short attention span;
• difficulty solving problems;
• difficulty reading;
• difficulty understanding spoken language - especially fast conversations between a group of people;
• difficulty organizing events or making detailed plans;
• problems with visual and physical coordination;
• irritability;
• convulsions;
• drowsiness;
• nausea.

In some infants, hydrocephalus causes the lower portions of the brain to move down towards the spinal cord - this is called Arnold-Chiari type 2 malformation.

Other problems

Other problems associated with spina bifida include:

• skin problems - decreased sensation;
• this can make it difficult to determine the location of damage to the skin on the legs with burns on the radiator, with injuries or infections;
• latex allergy - symptoms can range from a mild allergic reaction (watery eyes and skin rash) to a severe allergic reaction known as anaphylactic shock, which requires immediate medical attention.

How a Doctor Diagnoses Spina Bifida

Spina bifida is often discovered during a routine ultrasound scan, which is offered to all pregnant women between 18 and 21 weeks of pregnancy. If a neural tube defect is detected, the woman will be consulted by a medical commission on the possibility of prolonging or terminating the pregnancy.

Tests after birth

After the baby is born, a number of additional tests may be done to determine the severity of the condition and choose the most effective treatment. Tests may include:

• observing the baby's head growth and performing an ultrasound scan of the brain,
• computed tomography of the brain or magnetic resonance imaging of the brain to look for signs of hydrocephalus;
• bladder ultrasound
• ultrasound scan of the kidneys;
• assessment of the child's movements for signs of paralysis.

How a doctor treats spina bifida

Treatment of symptoms or conditions associated with spina bifida includes:

• surgery to close a hole in the spine and treat hydrocephalus;
• treatments that help ease the daily life of the patient;
• mobility aids and equipment;
• treatment of bowel and urinary problems.

With the right treatment and support, many children with spina bifida survive into adulthood.

Primary spinal repair surgery

Babies with a spinal fissure may have tissue and membranes coming out of the hole in the spine, damaging the nerves and can lead to serious infections, so the baby usually has spinal repair surgery within 48 hours of birth. During the operation, the surgeon will return the anatomically correct location of the spinal cord and exposed tissues or nerves, then close the cleft in the spine with muscles and skin. While this will fix the defect, unfortunately it cannot completely fix nerve damage.

Treatment of hydrocephalus

To treat hydrocephalus surgically, a surgeon implants a thin tube (shunt) to drain excess fluid from the brain to another part of the body, usually the abdomen. The shunt most often remains in place for the rest of the child's life. Further surgery may be required if:

• the shunt is blocked or infected;
• the child is growing out of the shunt and needs a larger size.

Physiotherapy

Physiotherapy is a method of treatment aimed at helping the patient to move, prevent deformity and stop further weakening of the leg muscles. It may include daily exercise to maintain muscle tone, as well as the wearing of special splints to support the legs.

Treatment for bladder problems

Treatment for bladder problems includes:

• antibiotic therapy - sometimes lifelong antibiotics are needed to prevent kidney and urinary tract infections;
• medicines to help relax the bladder so it can store more urine;
• bladder catheterization - using a catheter, urine is removed from the bladder several times a day to prevent urinary stasis and infection;
• Bladder surgery - may involve enlarging the bladder so it can hold more urine, or connecting the appendix to the bladder and creating an opening in the abdomen for easier catheter insertion.

Treatment of bowel problems

Treatment of bowel problems includes:

• laxatives - medicines to help empty the bowels;
• suppositories and enemas for constipation;
• colostomy - an operation to retract the end of the large intestine through an opening to the abdomen;
• Attaches a stool bag to the opening.

A colostomy may be recommended if other treatments fail.

Prevention of spina bifida with folic acid

The best way to prevent spina bifida is to take folic acid supplements before and during pregnancy. A woman is usually given a 400 mcg folic acid tablet every day during the planning period and up to 12 weeks of pregnancy. A diet rich in foods containing folic acid is also recommended.

Recommendations for women at increased risk of spina bifida

Women at increased risk of having a child with spina bifida should be given a higher dose of folic acid (5 mg).

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Scientific sources:

1. Altynnik H.A. The value of ultrasound assessment of the thickness of the nuchal space of the fetus in early pregnancy for prenatal diagnosis of chromosomal abnormalities: Diss. . cand. honey. Sciences. M., 2002.
2. Medvedev M.V., Altynnik H.A. On the issue of ultrasound assessment of fetal anatomy in early pregnancy // Prenat. Diagn. 2002. V. 1. No. 2. S. 158-159.
3. Fundamentals of prenatal diagnosis / Ed. Yudina E.V., Medvedeva M.V. M.: RAVUZDPG, Realnoe Vremya, 2002. 184 p.
4. Sinitsin, V.E.: Magnetic resonance angiography of today. The level of development and new opportunities / V.E. Sinitsin, E.A. Timonina, O.V. Stukalova // Med. visualization. - 1996. - No. 4. - S. 36-44.
5. Turkin A.M. MRI in the diagnosis of the brain. Diss. candidate of medical sciences - M., 1990.-158 p.

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Spina bifida - Site zdorovieinfo.

Spina bifida (spina bifida, spina bifida, spina bifida) is a birth defect that develops when the spine and spinal cord do not develop properly. It falls under the broader category of neural tube malformations.

The neural tube is an embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that surround them. Typically, the neural tube forms early in pregnancy and closes by day 28 after conception. In infants with spina bifida, a section of the neural tube fails to develop or close properly, resulting in malformations of the spinal cord and bones of the spine.

Spina bifida can range from mild to severe depending on the type of defect, size, location, and complications. When early treatment of spina bifida is needed, it is performed surgically, although such treatment does not always completely solve the problem.

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