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PubMed This is a summary of 24 peer-reviewed journal articles Updated
Neonatology · Myelomeningocele

The Newborn Period: Your Baby's First Days

At a Glance

In the first days after birth, a baby with myelomeningocele needs NICU care to keep exposed spinal tissue moist and protected, followed by spinal closure when safely possible. Doctors also monitor brain fluid, breathing, feeding, bladder, kidneys, and movement.

The first days after your baby is born with myelomeningocele are focused on two primary goals: protecting the exposed spinal cord and establishing a baseline for your child’s lifelong care. This period involves a specialized team including neonatologists, neurosurgeons, and urologists who work together in the Neonatal Intensive Care Unit (NICU) [1][2].

Immediate Postnatal Priorities

If your baby did not have fetal surgery, the most urgent task at birth is to keep the spinal defect—the placode (the exposed nerve tissue)—clean and moist. Nurses will typically place a sterile, non-adherent dressing soaked in saline over the sac to prevent it from drying out (desiccation) or becoming infected [3][4].

Your baby will usually be positioned on their stomach (prone) or side to avoid putting any pressure on the spinal lesion [3]. While you may not be able to hold your baby in the traditional way immediately, the NICU team will help you find safe ways to touch and bond with your newborn. Pain control, feeding support, and lactation assistance are prioritized during this time.

The First Surgery: Spinal Closure

Neurosurgical closure of the spinal defect is typically performed as soon as safely feasible, often within 24 to 72 hours of life [5][6]. The goals of this surgery are:

  • Protection: Covering the exposed neural placode to limit further damage. Note: this surgery cannot reliably restore nerve tissue that was already damaged before birth. [1]
  • Watertight Seal: Closing the dura (the protective layer around the nerves) to prevent Cerebrospinal Fluid (CSF) from leaking out [1][7].
  • Skin Coverage: Closing the skin over the defect. For larger openings, a plastic surgeon may assist by using flaps of skin or muscle to ensure a strong closure [8][7].

Managing Fluid in the Brain

After the back is closed, the team shifts its focus to hydrocephalus, the buildup of fluid in the brain. Not all babies will need a procedure for this immediately. Doctors monitor this through:

  • Daily Head Circumference: Measuring how quickly the head is growing [9][10].
  • Physical Exams: Feeling the fontanelle (the “soft spot” on the head) to see if it is bulging or tense [9][10].
  • Imaging: Using cranial ultrasound or MRI to look at the size of the brain’s fluid-filled spaces (ventricles) [11][12].

If the pressure becomes too high, the neurosurgeon may recommend a Ventriculoperitoneal (VP) Shunt, a small tube that drains fluid into the abdomen, or an ETV+CPC (Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization). ETV+CPC creates an internal bypass for the fluid and burns a small amount of tissue to reduce CSF production. ETV+CPC is not a straightforward alternative to a shunt for every child; candidacy and success rates depend heavily on the child’s anatomy and the center’s experience [13][14].

Monitoring the Chiari II Malformation

Almost all children with myelomeningocele have a radiographic Chiari II Malformation (visible on scans), where the lower part of the brain sits lower than normal. However, symptomatic brainstem compression is much less common [15][16]. In the NICU, the team monitors your baby for clinical signs that warrant attention:

  • Breathing: Watching for pauses in breathing (apnea) or a high-pitched sound when inhaling (stridor) [17][16].
  • Feeding: Assessing for difficulty swallowing or signs that milk is going into the lungs (aspiration) [16][18].

Urologic and Orthopedic Baselines

As discharge approaches, your team will establish “baseline” testing. The timing of these tests is individualized and varies by hospital protocol; some happen before discharge, while others are scheduled shortly after you go home [19][20]:

  • Renal Ultrasound: To check the health of the kidneys and look for urine backup (reflux).
  • Bladder Assessment: To see if the baby empties completely. Depending on center protocol and ultrasound results, some babies may need Clean Intermittent Catheterization (CIC) starting in the nursery. If needed, the team will thoroughly teach you how to perform this [21][20].
  • Urodynamics: A test of bladder pressure that may be done in the hospital or scheduled soon after discharge.
  • Physical Therapy Assessment: Checking the baby’s hips, knees, and feet for alignment needs [22][23].

By the time of discharge, you should have a clear “road map” of follow-up appointments and a written plan for who to call after-hours if you suspect a wound infection or fever [2][24].

Common questions in this guide

Why does my baby need surgery on the back so soon after birth?
Closure is often performed within 24 to 72 hours of birth when the baby is stable enough for surgery. It covers the exposed nerve tissue, seals the protective layer around the nerves to reduce spinal-fluid leakage, and closes the skin. The operation protects the area but cannot reliably restore nerve tissue that was damaged before birth.
How will the NICU protect the open spinal area before surgery?
Before surgery, the NICU team generally covers the open area with a sterile, non-adherent dressing moistened with saline to keep it clean and moist. Your baby is usually positioned on the stomach or side so the lesion is not under pressure. The team can also help you touch and bond safely while supporting pain control and feeding.
How will doctors know whether my baby needs treatment for hydrocephalus?
Not every baby needs immediate treatment for hydrocephalus. The team checks head growth, examines the soft spot, and may use ultrasound or MRI to monitor the brain’s fluid-filled spaces. If pressure becomes too high, a ventriculoperitoneal shunt, which drains fluid to the abdomen, or an endoscopic procedure called ETV+CPC may be considered based on the baby’s anatomy and the center’s experience.
What newborn signs could suggest a Chiari II problem?
Chiari II changes are visible on scans in almost all children with myelomeningocele, but symptoms from pressure on the brainstem are much less common. In the newborn period, clinicians watch for pauses in breathing, a high-pitched breathing sound, trouble swallowing, or milk entering the lungs. If concerns arise, the team may arrange breathing or feeding assessments before discharge.
What urology and movement checks happen before my baby goes home?
Before discharge or soon afterward, testing may include a kidney ultrasound, an assessment of whether the bladder empties fully, and urodynamics, which measures bladder pressure. A physical therapist may check the hips, knees, and feet. Some babies start clean intermittent catheterization, and the team should teach caregivers the technique.
What should I have in place before bringing my baby home?
Ask for a written follow-up plan, the name of the team contact, and an after-hours number before leaving the hospital. The team should review wound care and what to do if your baby has a fever or you suspect a wound infection or spinal-fluid leak. If catheterization is needed, make sure you feel comfortable performing it before discharge.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What specific antibiotic and positioning protocol will you use to protect the spinal sac before surgery?
  2. 2.If a shunt is recommended, why is it necessary now versus waiting and monitoring head circumference and fontanelle tension?
  3. 3.Does my baby show any signs of symptomatic Chiari II compression (like breathing or swallowing difficulty), and will they need a bedside sleep study or feeding evaluation before discharge?
  4. 4.What is the timeline for my baby's first urology assessments (like ultrasounds or urodynamics), and will any be done before we leave the hospital?
  5. 5.Can you walk me through the specific signs of a CSF leak or wound infection that I should watch for at home?

Questions For You

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References

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This page is for informational purposes only and does not constitute medical advice. Your baby’s NICU, neurosurgery, urology, and rehabilitation teams should guide care tailored to your baby.

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