Top Guide on Fetal Myelomeningocele Repair from Surgery (FAQ)

article updated from Oct 18 2022

This page contains the most popular questions people have about myelomeningocele repair treatment and the most important facts surrounding this medical condition. On this page, you can find the answers to the most popular questions asked online, such as the known and unknown facts publicly available on it. 

As one of the subtypes of Spina Bifida (SB), Myelomeningocele (MMC) is not just the most severe form of this birth defect, it is also the most common subtype accounting for over 75% of all SB cases. Myelomeningocele repair treatment occurs during pregnancy while the baby is still in the womb. The procedure of myelomeningocele repair treatment is important to be carried out during pregnancy as it can prevent further damage to the spinal cord.

Can myelomeningocele or Spina Bifida be corrected with surgery?

Myelomeningocele or Spina Bifida can be corrected with surgery as due to medical development, it has been possible for fetal spina bifida surgery to be carried out by doctors to treat birth defects. 

While prenatal repair of myelomeningocele is not considered a cure by medical professionals, it is still a better solution that can offer better results compared to traditional postnatal repair. Fetal surgery for this condition can help improve mobility and divert fluid from the brain. [1]

Myelomeningocele repair, Myelomeningocele treatment, Myelomeningocele surgery, Myelomeningocele symptoms, Myelomeningocele prognosis

 

(This image is a simple illustration of the before / after look when having a successful surgery for MMC Repair)

Many cases of SB are also treated within the first 48 hours of a baby’s life. This surgery procedure is considered a medical emergency as about 90% of children with SB develop hydrocephalus, which can be a dangerous condition if left untreated. 

Babies born with SB need to have the exposed area of their spinal cord repaired to prevent further damage. In most cases, a neurosurgeon is part of the surgery team to put the neural tissues back in the spinal canal and closes the muscle and skin in that particular area. If the area is too large, a plastic surgeon might also be part of the surgery team. [2]

(*Warning! Graphic Video* Dr. Rohit K. Khosla from Stanford Children’s Hospital showing his procedure with MMC Postnatal Closure)

Is there a cure for myelomeningocele?

There is no cure for myelomeningocele or Spina Bifida but due to recent medical developments, there are treatments available that can prevent the condition from getting worst like prenatal or postnatal repair treatment. 

Postnatal repair treatment is carried out within 48 hours of birth by surgeons to put the spinal cord and any exposed nerves or tissues back into the correct place. The open gap in the baby’s spine is closed and the hole is sealed with skin and muscle. [3]

Prenatal repair treatment or fetal surgery is a delicate surgical procedure carried out by surgeons while the baby is still in the womb. The procedure consists of opening the uterus and proceeding to close the opening in the baby’s spine. This method of SB treatment is considered a better option than postnatal repair treatment as it offers significantly better results. [4]

 

(Mary Jo Dunleavy, RN, Nurse Coordinator in the Spina Bifida Clinic at Boston Children’s Hospital, talks about a controlled study that focuses on prenatal fetal surgery for myelomeningocele repair. )

What is a myelomeningocele repair?

A myelomeningocele repair is a surgery carried out as treatment this type of spina bifida located in the spine and spinal membranes. This surgery is either done during pregnancy or after birth, also known as fetal spina bifida repair (prenatal) and postnatal myelomeningocele repair. 

Postnatal myelomeningocele repair is a procedure carried out by a surgeon within 24 to 48 hours after the baby’s birth. This procedure consists of a surgeon closing the opening in the back of the baby’s spine. [5]

It is performed by surgeons to preserve the patient’s existing function and to cover the exposed spinal cord. It is also performed to eliminate cerebrospinal fluid (CSF) leakage and prevent infection. This defect comes in the form of a small size spot on the spine but there are also many large myelomeningocele cases. [6]

How is myelomeningocele repaired?

Myelomeningocele is treated within 24 to 48 hours after birth. There are medical cases where myelomeningocele is treated before birth during the mother’s pregnancy. If the procedure is being carried out after birth, then the baby is kept on the belly to protect the sac and prevent it from breaking. [7]

For procedures carried out before birth, fetal surgeons open the uterus and from there proceed to close the opening in the baby’s spine. This particular procedure is also known as fetal spina bifida surgery which, according to studies, has helped immensely in preventing further damage to the baby’s spinal cord while in the womb. [8]

(A multidisciplinary team led by Darrell Cass, MD, has repaired myelomeningocele defects in two patients prior to birth, marking the successful beginning of Cleveland Clinic’s fetal surgery program.) 

When is myelomeningocele surgery done?

Myelomeningocele surgery is done either during pregnancy or after the baby’s birth within 48 hours as soon as the baby has been diagnosed by a medical professional. Studies show that early surgery as soon as the baby is diagnosed is the best way to prevent further damage to the baby’s spine, such as infection and swelling. [9]

Prenatal repair of myelomeningocele is carried out while the baby is still in the womb. This procedure is performed between 23 weeks and 25 weeks of gestation. A pediatric neurosurgeon removes the myelomeningocele sac and puts the spinal cord in the spinal canal and finishes it by closing the surrounding tissue and skin over the defect area so the spinal cord can be protected from exposure to the amniotic fluid. [10]

What is the meningomyelocele surgery success rate? 

The myelomeningocele surgery success rate is known to be variable as the results are not consistent, every patient’s case is different. As the newest cutting-edge treatment, fetal spina bifida surgery or prenatal spina bifida repair is one of the most advanced treatments for MMC repair as this procedure has one of the highest success rates. [11]

What are the steps for meningomyelocele repair? 

The steps for myelomeningocele repair are carried out after the baby has been diagnosed with this birth defect. Due to medical advancement, meningomyelocele can be detected during pregnancy. If meningomyelocele is detected in the fetus then the fetal meningomyelocele repair procedure will be carried out.

When this procedure is carried out after birth to close the open defect, once it is done the baby is monitored to see if there are any signs of hydrocephalus. Hydrocephalus is quite common in cases of MMC. It can occur at any time within the first few months of the patient’s life. 

If MMC repair is carried out before birth, also known as fetal SB repair, medical professionals will first have to make sure that both mother and baby are eligible for this procedure. Doctors will carry out an MRI, genetic testing, fetal echocardiogram, and multiple ultrasounds to make sure both mother and baby are fit for this in-utero surgery. [12]

What is the timeline for Myelomeningocele repair?

The timeline for myelomeningocele is within the first day of life or 48 hours for open myelomeningocele repair or postnatal MMC repair. For prenatal or fetal myelomeningocele repair, the procedure is usually carried out before 26 weeks. 

After birth as soon as the baby has been diagnosed by a doctor, early surgical intervention helps make the baby’s stay at the hospital shorter. After surgery, antibiotic therapy has also been discovered to present a lower complication rate among babies with this birth defect. Medical professionals recommend corrective surgery to be undertaken at the earliest convenience to prevent further damage and infection. [13]

Why does myelomeningocele require protection after birth?

Myelomeningocele requires protection after birth to prevent severe complications from worsening and to prevent further infection and damage to the patient’s spinal cord. Postnatal treatment of this birth defect includes immediate surgical closure of the spinal canal at birth as well as lifelong supportive care for severe cases. [14]

How long do you have to repair myelomeningocele to prevent infection?

You have to treat myelomeningocele within the first 48 hours or as soon as possible after birth to prevent infection of the spinal cord. Early surgical intervention can help improve the patient’s quality of life and development. [15]

What are the complications or problems associated with myelomeningocele?

The complications or problems associated with myelomeningocele are issues with lower extremity function, lower extremity neuromotor function, mobility, bladder and bowel, mental development and motor function. 

Studies show MMC is a type of SB birth defect that is associated with various disorders like the Arnold-Chiari II malformation, cognitive disability, hydrocephalus, musculoskeletal abnormalities, and motor, bowel and bladder dysfunction. 

MMC is a type of SB birth defect that can affect the quality of life of a patient. With timely detection and complete correction, complications or problems can be remarkably minimized and managed by a proper healthcare support team. [16]

What are Complications After Myelomeningocele Repair?

The complications after myelomeningocele repair are brain swelling or hydrocephalus-related issues, bladder and bowel problems, slow mental development, and mobility issues or difficulty walking. There are also other complications reported, such as wound dehiscence, wound purulence, and the presence of lipid content in the birth defect. [17]

Can my baby have a healthy life after myelomeningocele repair?

Your baby can have a healthy life after myelomeningocele repair as this procedure can result in improved neurological outcomes, especially if prenatal myelomeningocele repair surgery was carried out during pregnancy. 

In general, SB can lead to difficulties with ambulation and mobility but it all depends on the size and location of this type of birth defect. Most patients with SB can experience neurogenic sphincter dysfunction that can result in impaired bladder and bowel control. 

Studies show that prenatal myelomeningocele repair, also known as fetal myelomeningocele repair, can improve the patient’s hindbrain herniation, independent mobility, ventriculoperitoneal shunting, and bladder outcomes. [18]

What is the primary reason for surgical repair of myelomeningocele?

The primary reason for surgical repair of myelomeningocele is to prevent further infection and damage from happening to the baby. Prenatal or postnatal MMC repair procedure helps to reduce any complications that come with this birth defect. 

Though cases of MMC are medically considered incredibly rare, it is a type of birth defect that can cause a range of serious complications, such as walking difficulty or inability to walk, poor control of the bladder and bowel or in worst cases no control of bowel or bladder movement, and abnormal development of the legs and feet. 

With fetal SB repair, it has been discovered that this procedure can reduce the risk of children with MMC needing a shunt. The shunt rate is lower for cases of fetal SB repair. This prenatal procedure can also result in better neurologic function in the patient after birth. [19]

Do you cover myelomeningocele?

A myelomeningocele can be covered either during prenatal SB repair or postnatal myelomeningocele repair. MMC is a birth defect that consists of an open sac sticking out on the patient’s back or spinal cord as during gestation the neural tube has failed to close which made the neural tissue appear exposed on the spine. 

To cover a myelomeningocele birth defect, surgery has to be carried out by a team of surgeons to put the spinal cord back into the spinal canal so that the area of this birth defect can be closed and covered with normal and healthy skin. [20]

Which care is appropriate for an infant with myelomeningocele?

The type of care that is appropriate for an infant with myelomeningocele is the neonatal intensive care unit so the baby can be carefully monitored by medical professionals for evaluation and for surgery later on to close the defect. 

As part of the growing process, an infant with MMC may have to undergo a range of medical visits like neurology,orthopaedicss, rehabilitation, urology, occupational therapy, and physical therapy every couple of months to stay well and fit. [21]

How do I manage myelomeningocele?

You can manage myelomeningocele with the help and support of a team of healthcare professionals as MMC is a type of birth defect that can require lifelong healthcare assistance and support. 

Patients with MMC can live well and be healthy due to the advances in treatment modalities, technologies, and medical knowledge. MMC management needs life-long comprehensive neurologic, skin, musculoskeletal, urologic, and habilitation management. 

Reports state that management of SB begins before or at birth and can continue throughout the life of patients with this birth defect. [22]

What would be the best position for a baby with myelomeningocele?

The best position for a baby with myelomeningocele is on the abdomen as it is important to protect the protruding sac on the spine and protect it from further damage and infection. Every task in handling and managing the baby, such as breastfeeding and bathing, should be modified according to this position. [23]

Can a baby with myelomeningocele walk?

A baby with myelomeningocele cannot walk as it is still an early stage for normal babies to start walking but eventually as the baby grows, it heavily depends on where the location of the defect on the baby’s spine, the size of the defect, and the type of surgical procedure and care the baby received before and after birth.

This type of SB birth defect can cause a variety of issues in the legs and spine due to weak muscles in the legs and back. [24]

Which specific dressing would a nurse caring for an infant with myelomeningocele provide?

The specific dressing a nurse caring for an infant with myelomeningocele would provide is a mud-flap, also known as a 3M Steri-Drape, cut in half vertically so it can remain attached to the skin horizontally before the incision and above the buttocks to prevent stool contamination. [25]

These are the most popular questions on treatment that have been asked in recent times. If there’s something that you had like to ask regarding this treatment, do not hesitate to drop us a message. If there’s something you would like to ask about this content, please let us know.  

 

References

  1. The Children’s Hospital of Philadelphia. (2014, March 31). Fetal surgery for spina bifida (Myelomeningocele, MMC). Children’s Hospital of Philadelphia. Retrieved October 14, 2022, from https://www.chop.edu/treatments/fetal-surgery-spina-bifida 
  2. Spina bifida. AANS. (n.d.). Retrieved October 14, 2022, from https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Spina-Bifida 
  3. NHS. (n.d.). Spina Bifida Treatment. NHS choices. Retrieved October 14, 2022, from https://www.nhs.uk/conditions/spina-bifida/treatment/ 
  4. The Children’s Hospital of Philadelphia. (2014, March 31). Fetal surgery for spina bifida (Myelomeningocele, MMC). Children’s Hospital of Philadelphia. Retrieved October 14, 2022, from https://www.chop.edu/treatments/fetal-surgery-spina-bifida 
  5. U.S. National Library of Medicine. (n.d.). Meningocele Repair: Medlineplus medical encyclopedia. MedlinePlus. Retrieved October 15, 2022, from https://medlineplus.gov/ency/article/003020.htm 
  6. Nejat, F., Baradaran, N., & Khashab, M. E. (2011, January). Large myelomeningocele repair. Indian journal of plastic surgery : official publication of the Association of Plastic Surgeons of India. Retrieved October 15, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111132/ 
  7. Myelomeningocele repair. Goodman Campbell. (2021, February 10). Retrieved October 15, 2022, from https://www.goodmancampbell.com/treatments/spine-care/pediatrics/myelomeningocele-repair/ 
  8. The Children’s Hospital of Philadelphia. (n.d.). About fetal surgery for Spina Bifida (Myelomeningocele, MMC). Children’s Hospital of Philadelphia. Retrieved October 15, 2022, from https://www.chop.edu/treatments/fetal-surgery-spina-bifida/about 
  9. Story, C. M. (2017, March 31). Meningocele Repair: Purpose, procedure & recovery. Healthline. Retrieved October 15, 2022, from https://www.healthline.com/health/meningocele-repair 
  10. The Children’s Hospital of Philadelphia. (2014, March 31). Fetal surgery for spina bifida (Myelomeningocele, MMC). Children’s Hospital of Philadelphia. Retrieved October 15, 2022, from https://www.chop.edu/treatments/fetal-surgery-spina-bifida/ 
  11. Fetal Health Foundation. (2022, July 19). Fetal surgery for myelomeningocele: Liam’s story. Fetal Health Foundation. Retrieved October 18, 2022, from https://www.fetalhealthfoundation.org/myelomeningocelespina-bifida/liam-fetal-surgery-for-mmc/ 
  12. Meningomyelocele. Meningomyelocele – an overview | ScienceDirect Topics. (n.d.). Retrieved October 17, 2022, from https://www.sciencedirect.com/topics/medicine-and-dentistry/meningomyelocele 
  13. Oncel, M. Y., Ozdemir, R., Kahilogulları, G., Yurttutan, S., Erdeve, O., & Dilmen, U. (2012, June). The effect of surgery time on prognosis in newborns with meningomyelocele. Journal of Korean Neurosurgical Society. Retrieved October 18, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3424176/ 
  14. Adzick, N. S. (2012, February). Fetal surgery for myelomeningocele: Trials and tribulations. Isabella Forshall Lecture. Journal of pediatric surgery. Retrieved October 18, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3278714/ 
  15. Prenatal care for myelomeningocele (spina bifida). Prenatal Care for Myelomeningocele (Spina Bifida) | CS Mott Children’s Hospital | Michigan Medicine. (n.d.). Retrieved October 18, 2022, from https://www.mottchildren.org/conditions-treatments/peds-fetal-medicine/prenatal-care-myelomeningocele-spina-bifida 
  16. Zoghi, S., Feili, M., Mosayebi, M. A., Afifi, M. A., Feili, A., Masoudi, M. S., & Taheri, R. (2021). Surgical outcomes of myelomeningocele repair: A 20-year experience from a single center in a middle-income country. https://doi.org/10.1101/2021.11.07.21266030 
  17. Myelomeningocele repair outcomes. Children’s Minnesota. (n.d.). Retrieved October 18, 2022, from https://www.childrensmn.org/services/care-specialties-departments/fetal-medicine/fetal-outcomes/mmc-outcomes/ 
  18. Fetal surgery for open spina bifida – wiley online library. (n.d.). Retrieved October 17, 2022, from https://obgyn.onlinelibrary.wiley.com/doi/10.1111/tog.12603 
  19. Moldenhauer JS;Soni S;Rintoul NE;Spinner SS;Khalek N;Martinez-Poyer J;Flake AW;Hedrick HL;Peranteau WH;Rendon N;Koh J;Howell LJ;Heuer GG;Sutton LN;Johnson MP;Adzick NS; (n.d.). Fetal myelomeningocele repair: The post-moms experience at the Children’s Hospital of Philadelphia. Fetal diagnosis and therapy. Retrieved October 18, 2022, from https://pubmed.ncbi.nlm.nih.gov/25138132/ 
  20. NHS. (n.d.). Myelomeningocele. NHS choices. Retrieved October 18, 2022, from https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/myelomeningocele/ 
  21. Myelomeningocele (Spina bifida) – fetal to newborn care. Dayton Children’s Hospital. (2017, December 4). Retrieved October 18, 2022, from http://fetaltonewborn.org/myelomeningocele-spina-bifida 
  22. Phillips, L. A., Burton, J. M., & Evans, S. H. (2017, July 19). Spina bifida management. Current Problems in Pediatric and Adolescent Health Care. Retrieved October 18, 2022, from https://www.sciencedirect.com/science/article/abs/pii/S1538544217301232 
  23. Positioning infants with myelomeningocele – jstor.org. (n.d.). Retrieved October 17, 2022, from https://www.jstor.org/stable/3423166 
  24. Mayo Foundation for Medical Education and Research. (2022, January 8). Spina bifida. Mayo Clinic. Retrieved October 18, 2022, from https://www.mayoclinic.org/diseases-conditions/spina-bifida/symptoms-causes/syc-20377860 
  25. Care of the patient with myelomeningocele (15.4) – medical home portal. (n.d.). Retrieved October 17, 2022, from https://www.medicalhomeportal.org/link/2344 

 

Old References

  1. Gaskill SJ. Primary Closure of Open Myelomeningocele. Neurosurg Focus. 2004;16(2):E3.
  2. Ferschl M, Lee H, Rollins MD. Anesthesia for in utero rep of myelomeningocele. Anesthesiology 2013;118(5):1211-23.
  3. Meningocele rep. [internet]. [last updated 2011 Sep 2; cited2013 Aug 20]. Available from: http://www.nlm.nih.gov/medlineplus/ency/article/003020.htm.
  4. Nejat F, Baradaran N, Khashab ME. Large myelomeningocele rep. Indian J Plast Surg 2011;44(1):87–90.
  5. Adzick NS, Walsh DS. Myelomeningocele: prenatal diagnosis, pathophysiology and management. Semin Pediatr Surg 2003;12(3):168-74.

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