Spina Bifida Repair - Myelomeningocele Repair

Closing the back early protects every nerve that still works. When the scan shows it in pregnancy, the plan starts before birth.

Among babies in the MOMS trial whose myelomeningocele was repaired after birth, 82 percent needed a shunt by the age of one, and the timing and quality of the repair shape how much a child walks, how often the shunt fails and how the bladder works for years afterward.

What myelomeningocele means

In the first month of pregnancy, the tissue that becomes the spinal cord rolls up into a tube and closes. When the lower end of that tube fails to close, the spinal cord and its coverings stay open on the baby's back inside a thin sac, and the nerves inside are exposed to the fluid around the baby for the rest of the pregnancy. That open lesion carries the name myelomeningocele, the most severe and the most common form of open spina bifida. The level of the opening matters most. A defect high in the lower back affects more leg muscles than one near the tailbone, and almost every child has some effect on bladder and bowel control. Most babies also have a Chiari II malformation, in which the back of the brain sits low and blocks the flow of spinal fluid, which explains why hydrocephalus comes with this condition so frequently.

Folic acid taken before and in early pregnancy lowers the risk in the next pregnancy, and every family who has had one affected baby gets that advice in writing.

Before birth or after birth

Two kinds of repair exist, and the choice depends on when the diagnosis is made.

This table scrolls sideways on a narrow screen. Swipe or drag to see every column.

In 2011 the New England Journal of Medicine published the Management of Myelomeningocele Study, known as MOMS, which randomly assigned women carrying a baby with myelomeningocele to surgery before 26 weeks or to standard repair after birth, and the trial stopped early because prenatal repair worked. Shunts by the age of one fell from 82 percent to 40 percent, motor function at 30 months improved, and the back of the brain sat higher on scans. The price came as earlier delivery and a thinner or separated scar on the womb at the birth. The follow-up at school age, published in Pediatrics in 2020, found 29 percent of children repaired before birth walking without braces or aids against 11 percent of those repaired after it, and shunts in 49 against 85 percent, with no clear difference in thinking and learning, so the advantage of prenatal repair lies in movement, independence and fewer operations on the shunt.

Who qualifies for prenatal repair

MOMS centers took a single baby with a defect between the upper lumbar and the sacral spine, a Chiari II malformation, no other major problem, and a mother without the conditions that make uterine surgery unsafe. Ventricle size on the first scan changes the picture. A later MOMS analysis in the Journal of Neurosurgery Pediatrics found that when the ventricles already measured 15 mm or more, prenatal surgery did not reduce the need for a shunt.

Most families arrive after the window has closed.

The first 48 hours after birth

How the back is closed

Under the operating microscope, the neurosurgeon frees the exposed spinal cord from the surrounding skin, rolls it gently back into a tube with fine stitches so it lies smoothly inside the spinal canal, and then closes the layers over it one by one, the dura that holds the spinal fluid, the muscle and fascia beside the spine, and finally the skin. Each layer adds a seal against a fluid leak. The aim of the operation goes beyond covering the hole. Reconstructing the cord into a tube reduces the scar that later tethers it, and a watertight dura protects against meningitis. In a baby with a sharp hump in the spine, a kyphosis, the surgeon can remove part of the bent vertebrae in the same operation so the skin closes flat. Function in the legs rarely improves after the operation, because the damage happened during the pregnancy, and the operation protects what is already there.

Large defects and skin cover

Wide defects need more. When the skin will not close without tension, a plastic surgeon moves flaps of skin and muscle from the back to cover it, sometimes in the same operation, and published packages from Istanbul hospitals list skin graft procedures and, where hydrocephalus is already present, a shunt in the same session as the back closure.

Hydrocephalus and the shunt question

Many babies need treatment for hydrocephalus in the weeks after the back closure. The closed defect no longer lets fluid escape. A ventriculoperitoneal shunt drains spinal fluid from the brain into the abdomen through a thin tube under the skin, while some babies suit an endoscopic third ventriculostomy instead, frequently combined with cauterizing the choroid plexus that makes the fluid, which spares those who respond a lifelong tube. Shunt revisions by the first birthday reached 40.2 percent after postnatal repair in the MOMS trial and 15.4 percent after prenatal repair.

Shunts can block at any age.

Risks of the operation

• Spinal fluid leak from the wound. The most frequent early problem. A tight dressing and lying face down treat most, and a few need a second stitch or treatment of hydrocephalus that is pushing fluid out.
• Wound breakdown and infection. More likely with wide defects closed under tension. Antibiotics and dressings treat infection, and plastic surgery closes larger gaps.
• Meningitis. The reason closure happens early. Treated with intravenous antibiotics.
• Breathing and swallowing problems from the Chiari II malformation. Noisy breathing, pauses in breathing or weak swallowing call for urgent assessment, and the first step usually means treating hydrocephalus.

Growing up with spina bifida

Repair begins a lifetime of care, and the coordination of that care decides how well a child does.

Bladder and bowel

Nearly every child has some effect on the nerves to the bladder. High pressure inside a bladder that does not empty can damage the kidneys silently, so a urologist follows the bladder with ultrasound and urodynamic studies from infancy, and clean intermittent catheterization, emptying the bladder with a soft tube several times a day, starts early in many children and later becomes something the child does alone. A bowel program keeps the child clean and confident at school.

Walking

Lesion level sets what the legs can do. Children with low lesions walk, many with ankle braces, and children with higher lesions use walking aids or a wheelchair for longer distances. School-age walking differed sharply in the MOMS follow-up published in JAMA Pediatrics in 2021, with 51.3 percent of children repaired before birth walking in the community against 23.1 percent after postnatal repair. Physiotherapy keeps a child moving. So does orthopedic follow-up of the hips, feet and spine.

Tethered cord

The repaired cord can stick to the scar and stretch as the child grows. New back or leg pain, worsening walking, a change in bladder control or a curve that progresses fast lead to an MRI and, when the signs fit, an untethering operation. Surgery on a scan finding alone, without symptoms, brings risk without benefit, and a seven-hospital study in Child's Nervous System found more infections and returns to theater, with no neurological gain, when the cord was untethered as a precaution before scoliosis surgery.

Latex allergy stays a lifelong precaution.

Which families travel, and when

A newborn with an open back cannot safely wait days for a flight, which makes local closure the right choice for a baby already born abroad.

How long a family stays in Istanbul

A planned birth with closure of the back takes the longest. The family arrives some weeks before the due date, and after birth and the closure the baby stays in the neonatal unit until the wound has healed, feeding is established and the head size is stable, one to two weeks in most babies and longer if a shunt follows. One published Istanbul package lists four nights in a private room for the repair combined with a shunt, which suits a baby referred shortly after birth. Older children coming for untethering or shunt surgery stay around two weeks.

Flying with the baby

Flying waits for a healed back, a stable head size, steady feeding and the pediatrician's agreement. Your neurosurgeon writes the clearance date into the discharge letter, together with the shunt type and setting where one was placed.

What decides the cost

Your situation sets most of the figure. A planned birth adds the delivery, the neonatal unit nights and the mother's stay, while the size and level of the defect decide whether a plastic surgeon closes the skin, and hydrocephalus adds a shunt or an endoscopic procedure, in the same operation or later. MRI of the brain and spine, urology tests and the nights in hospital all move the total.

Published packages for spina bifida surgery in Istanbul list the MRI of the brain and spine, the repair, a shunt where needed, skin graft procedures, the hospital nights with a room for a companion, airport transfers and an interpreter. Hotel or apartment nights near the hospital are billed separately, by the day.

A quote you can compare names the operation, says whether a shunt sits inside it, and counts the neonatal or ward nights. That figure comes only from a pediatric neurosurgeon looking at the scans or photographs of the back. The review costs nothing.

Arranging the trip

One coordinator follows the case from the first WhatsApp message to the flight home. The number stays open afterward. English, Arabic, French, Russian, Serbian, Romanian and Spanish are spoken by the team, with an interpreter for other languages, and a companion bed lets a parent stay in the room every night while the international patients office books the hotel for the nights before and after. The invitation letter for a medical visa, naming the hospital and the treating doctor, goes out about ten days before travel. Transfers are arranged. Halal, vegetarian and diabetic meals come from the hospital kitchen, a prayer room sits on site, and a request for a female physician goes to the department with your first message. For a planned birth, the same office books accommodation for the weeks before the due date, and the mother's pregnancy records and scans travel with her, so the obstetric and neonatal teams know the case before the first appointment.

Send the pregnancy scans or photographs of the baby's back with your first message.

Once you are back home

Spina bifida care works best through one clinic that sees the child regularly, with neurosurgery, urology, orthopedics and physiotherapy in the same place, and your local team carries that forward using the English discharge file while the coordinator passes questions and scans back to the neurosurgeon in Istanbul. Head size and development get checked frequently in the first year. Bladder tests follow the urologist's schedule.

Vomiting, drowsiness, a bulging soft spot, a headache that will not settle, fever with a red shunt track, or a sudden change in walking or bladder control. Each needs a doctor the same day. A blocked shunt or a tethered cord can be the cause.

Spina bifida repair FAQ