Baby Born With No Spine and Holes in Heart

What is a myelomeningocele?

A myelomeningocele (pronounced my-elo-men-IN-go-seal) is a defect of the backbone (spine) and spinal cord. Before nascency, the baby's spine, the spinal string and the spinal canal do not form or close normally.

A myelomeningocele is the about serious class ofspina bifida.

In babies with myelomeningocele:

• The bones of the spine (vertebrae) exercise not grade the normal style.
• A small sac extends through an opening in the spine. A membrane covers the sac.
• The sac holdscerebrospinal fluid (CSF) and tissues that protect the spinal cord (meninges).
• The sac may besides incorporate parts of the spinal cord and nerves.

Sometimes the sac opens up. It can open because of normal movements of your baby, either before or during nascency.

A myelomeningocele can happen anywhere along the spinal cord. It is most common in the lower back (lumbar and sacral areas). There is nerve harm below the level of the myelomeningocele. Every bit a result of the nerve harm, babies may have symptoms.

Babies with myelomeningoceles lower in the spine have less astringent symptoms. Babies with college myelomeningoceles have more than severe symptoms.

Myelomeningocele in Children

Myelomeningoceles are present when a child is born (congenital). Most ane to five children in every 1,000 born in the Us have a myelomeningocele. The condition develops during the tertiary calendar week of a woman'south pregnancy.

Doctors do not know exactly what causes myelomeningoceles. Evidence suggests genes may play a role, just the role is not strong. If a adult female has 1 child with a myelomeningocele, there is a less than 6% gamble that she volition have other children with the condition.

Nosotros practice know what can help forbid myelomeningoceles. Early in pregnancy, it is very important for women to go plentyfolic acid in their diets. This vitamin helps the baby's neural tube develop properly. The neural tube develops into the infant's encephalon and spinal cord. Neural tube defects like myelomeningocele accept get less common as doctors accept learned about the link with folic acid and every bit more women have taken folic acrid supplements during pregnancy.

Myelomeningocele at Seattle Children's

Seattle Children'south has been a leader for fifty years in providing consummate, coordinated care for children with myelomeningoceles. These children frequently accept other complex problems forth with their spinal defect and need many types of care as they grow up. Our neurosurgeons close the hole in your baby's back and work closely with experts from other medical fields – like Urology, Neurodevelopmental and Orthopedics – to brand sure your child gets all the intendance they need.

Doctors in our community usually notice myelomeningoceles during exams before the baby is born. They refer almost 20 babies with a myelomeningocele to Seattle Children's each year. Usually, the babies are transferred from the hospital where they are born to Seattle Children'south shortly later on their birth. Our neurosurgeons close the defect, usually within 24 to 48 hours of nascence. If your newborn is critically sick due to myelomeningocele, nosotros provide specialized care in our Neuro NICU – the just neonatal neurocritical care program in Washington, Wyoming, Alaska, Montana and Idaho.

If you are pregnant and your doctor detects that your baby has a myelomeningocele, you tin can come to Seattle Children'south Prenatal Diagnosis and Treatment Plan for an evaluation. Our doctors will consult on what handling your babe might need and what to wait.

In some cases, the defect can be closed before your baby is born. Families in our region who are interested in learning more about surgery during pregnancy are encouraged to contact centers of their choice in other states. Seattle Children's Prenatal Diagnosis and Treatment Plan will then work with the center of your option to facilitate care collaboration. In some cases, information technology is possible to return to Seattle for delivery. Seattle Children's would remain the heart for the baby's long-term wellness care related to spina bifida regardless of delivery location.

Nearly children with a myelomeningocele develop hydrocephalus. Neurosurgeons at Seattle Children'south have a peachy bargain of feel putting in shunts, a common treatment for hydrocephalus. Nosotros too have a lot of experience treating children with the related problems of tethered spinal cord, Chiari malformation and syringomyelia.

"Out of all the priceless gifts our care teams have given united states of america, in that location's one that sustains us: the simple conventionalities that our son has boundless potential." Malachi was diagnosed with myelomeningocele when his mom, Whitney, was nineteen weeks pregnant. In the first days of his life, Malachi fought through disquisitional encephalon, spinal and heart surgeries. He got the expert intendance he needed when specialists came together at Seattle Children's – the only nationally ranked, standalone children's hospital in the region. Today, he's thriving. Read Malachi's story.

Symptoms of Myelomeningocele

A baby with a myelomeningocele has a sac holding parts of the spinal cord sticking though their back. The baby is missing function, like move or sensation, beneath the level of the problem. The higher the myelomeningocele is on the infant's spinal string, the more function is missing.

Myelomeningocele tin can crusade symptoms that include:

• Issues moving parts of the trunk below the opening in the back
• Lack of awareness in their legs and feet
• Poor or no bowel and bladder command
• Twisted or abnormal legs and feet; for example, clubfoot
• Too much cerebrospinal fluid in the head (hydrocephalus)
• Problems with how the back of the brain formed (Chiari 2 malformation)
• Learning differences or delayed milestones (impaired cognitive development)

Diagnosing Myelomeningocele

Your doctor may find the condition before your babe is born. Pregnant women may have a blood exam called the quadruple screen to check for signs of sure conditions. If the exam shows yous have high levels of a protein (maternal blastoff fetoprotein, AFP) in your blood, your developing baby might havespina bifida. You may accept other tests to brand sure of the diagnosis. These include:

• Ultrasound
• Amniocentesis

Seattle Children'southward Prenatal Clinic sees pregnant women whose doctors have found a myelomeningocele. Our doctors can consult with you about what to expect and what treatment your babe might need.

Doctors also find myelomeningoceles after a baby is born. The baby may have imaging tests that let doctors see the spine. They include:

• Ten-ray
• Ultrasound
• Computed tomography (CT) browse
• Magnetic resonance imaging (MRI)

Treating Myelomeningocele

As children built-in with a myelomeningocele grow, they most likely will need treatment such as medicines and physical therapy. Some may need aids like braces, crutches or wheelchairs. Before long later on nascency, however, treatment for your babe is surgery.

Surgery for Myelomeningocele

The child is in position for repair of his spina bifida.

At Seattle Children's, our skillful neurosurgeons and plastic surgeons piece of work together to do surgery to cover your baby's spinal cord within your babe'due south get-go 48 hours of life to:

• Limit the gamble of infection
• Forbid more than damage to the spinal cord

The surgery does not assist your babe develop office that they were not born with.

Offset, the neurosurgeon closes the covering around the spinal cord (dura mater). And so the neurosurgeon and plastic surgeon close the muscles around the spinal cord. Finally, they close the skin over the open up area. The plastic surgeon may need to take a slice of skin from your baby's back or lesser to make a flap (pare graft) to shut the open area.

Closing the spinal cord defect in spina bifida.

Many babies with a myelomeningocele also have as well much cerebrospinal fluid in their heads (hydrocephalus). If your baby has severe hydrocephalus at nascency, they may need surgery for a temporary drain in the first few days after nascency. If a temporary bleed is used, a neurosurgeon will identify a long-term shunt when your infant is stable.

If your baby does not have hydrocephalus at birth, doctors wait to see if it develops later. If and then, neurosurgeons put in a shunt at that time.

Not all babies with a myelomeningocele need a shunt. Most babies who need a shunt become it 4 to viii weeks after nativity.

Fetal surgery

In some cases, neurosurgeons tin close the defect before the baby is born (in utero closure or fetal closure). The surgery is done effectually the 24th calendar week of pregnancy. Families in our region who are interested in learning more about surgery during pregnancy are encouraged to contact centers of their option in other states. Families tin review specifics of the process and learn more about whether they would qualify. Seattle Children'south Prenatal Diagnosis and Handling Programme will then work with the middle of your choice to facilitate records sharing and care collaboration. In some cases it is possible to return to Seattle for delivery. Regardless of commitment location, Seattle Children's would remain the center for the baby'due south long-term health care related to spina bifida.

If your doctor detects that your baby has a myelomeningocele before birth, you can come up to Seattle Children's Prenatal Diagnosis and Treatment Program for an evaluation. Our doctors can consult with y'all well-nigh what to await and what treatment your baby might demand.

Ongoing Intendance

Some children with myelomeningoceles have other conditions, similar hydrocephalus, tethered spinal string, Chiari malformationand syringomyelia, that need treatment.

Often, children with myelomeningoceles take other circuitous bug related to their nervous systems, such as problems with movement, lack of sensation, and lack of bowel and float control. These bug may require long-term care.

Each child is different, and nosotros will tailor your child's treatment to their needs. Your kid's neurosurgeon will piece of work closely with other experts at Seattle Children'due south to assess all your child'south needs and provide long-term coordinated care.

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Source: https://www.seattlechildrens.org/conditions/myelomeningocele/

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