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Course: Pediatric Nursing

Topic: Nursing Care of Child with Neurological Disorders (IV)

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Module Goals

Learners will be able to:

Identify factors associated with neural tube defects in children
Identify common signs and symptoms
Identify risk factors associated with neural tube defects
Explain the role of the nurse in caring for children with neural tube defects and nursing interventions commonly performed in the care of children

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Neural Tube Defects (NTDs)

Serious birth defects of the brain, spine, or spinal cord
The brain and spinal cord of a growing fetus develop from a structure called the neural tube
Defects occur due to incomplete closure of the neural tube
Occurs in the first month of pregnancy
Globally, 300,000 babies are born with NTDs per year (CDC, 2017)

Medline Plus,2021

NIH, 2018

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Types of NTDs

NIH, 2018

Spina bifida
Anencephaly
Encephalocele
Iniencephaly

Spina bifida and Anencephaly are the most common types

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Spina Bifida

Fetal spinal column doesn't close completely
The spinal cord and nerves protrude through the opening created
More common in the lower back but may occur anywhere along the spine
Three most common types:

Occulta
Meningocele
Myelomeningocele

CDC, 2020

Better Health, 2011

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Critical Thinking Question

All of the following are types of spina bifida except…………

Myelomeningocele
Meningocele
Spina Bifida Occulta
Hemophilia

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Spina Bifida (continued)

Spina Bifida Occulta (mildest type):

Sometimes called “hidden” spina bifida
Estimated to affect 10 % to 20% of healthy people
Characterized by a small gap in the spine, with no opening or sac on the back
Superficial cutaneous signs include a skin depression or dimple, dark tufts of hair and soft subcutaneous lipomas on the lumbosacral area
Usually, the spinal cord and the nerves are normal
Complications are rare, but may lead to significant abnormalities of the spinal cord e.g., tethered cord and syringomyelia

CDC, 2021

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Spina Bifida (continued)

Meningocele:

Meninges covering the spinal cord protrude through the opening
A sac of fluid protrudes but, the spinal cord is not in the sac
Little or no nerve damage
Most meningoceles are covered with skin
May lead to minor disabilities

CDC, 2021

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Spina Bifida (continued)

Myelomeningocele:

Most serious type
Occurs in approx 1 in 4000 live births
The meninges, spinal cord and blood vessels protrude through the opening
Part of the spinal cord and nerves in the sac are damaged
Results in moderate to severe disabilities:

Partial paralysis of lower extremities
Loss of feeling in lower extremities

CDC, 2020

Better Health, 2011

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Complications of Spina Bifida

Weakness or total paralysis of lower extremities
Bowel and urinary incontinence
Loss of skin sensation especially in lower extremities
Inability to feel hot or cold and can lead to accidental injury
Many infants will have or develop hydrocephalus
Orthopedic problems (‘Club foot’, scoliosis, kyphosis)
Latex allergy
Skin problems (sores/ulcers and blisters)
Frequent urinary tract infections
Chiari malformation

NHS, 2020

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Anencephaly

(NIH, 2018)

Most serious neural tube and is incompatible with life
The neural tube fails to close at the top resulting in absence of both cerebral hemispheres
Infants born with this condition usually remain:

Unconscious
Deaf, blind, and unable to feel pain
May have reflex actions (breathing and responding to touch)

Infants are either stillborn or die soon after birth

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Encephalocele

The neural tube fails to close near the brain forming an opening in the skull
The brain and membranes protrude through the skull forming a sac-like bulge
Sometimes, an encephalocele (small opening) in the nasal cavity or forehead area may go undetected until properly diagnosed
Infants with encephalocele may have other problems:

Hydrocephalus, limb paralysis, developmental delay
Intellectual disabilities, seizures, vision problems, microcephaly (a small head), and ataxia
Despite the various disabilities, some have normal intelligence

(NIH, 2018)

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Critical Thinking Question

Which of the following neural tube defects is not compatible with life?

Spina bifida
Anencephaly
Encephalocele
Spina bifida occulta

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Iniencephaly

The head is bent severely backward and spine is exceptionally distorted
Often, the infant lacks a neck, with the skin of the face connected to the chest and the scalp connected to the back
Other abnormalities may exist:

Cleft lip and palate
Cardiovascular irregularities, anencephaly, and malformed intestines

Infants born with this condition usually do not live longer than a few hours

NIH, 2018

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Risk Factors for Neural Tube Defects

MedlinePlus, 2021

Better Health, 2011

NHS,2020

Liao, 2009

Maternal folate deficiency
Obesity
Poorly controlled diabetes
Certain anti seizure medicines

Carbamazepine, valproic acid

Genetics:

Family history
Gene Mutation

Environmental factors (Air pollution, radiation)
Exposure to high temperatures during early pregnancy (Prolonged high fever and hot tub use)

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Diagnosis (Prenatal Test)

AFP (Alpha-fetoprotein):

A protein produced in the liver of a developing fetus
A high level of AFP might mean that the fetus has spina bifida
The “triple screen” that looks for neural tube defects and other issues

Ultrasound:

Detects spina bifida

Amniocentesis:

Higher than average levels of AFP in the fluid might mean that the baby has spina bifida

X-ray, MRI, or CT, to get a clearer view of the baby’s spine

CDC, 2020

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Critical Thinking Question

Which of the following are the risk factors for neural tube defects? (Select all that apply)

Maternal folate deficiency
Genetics
Prolonged high fever during pregnancy
Deficiency of calcium during pregnancy

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Treatment

Treatment for conditions associated with spina bifida:

Surgery soon after birth to close the opening in the spine and treat hydrocephalus
Therapies to help make day-to-day life easier and improve independence:

Physiotherapy
Occupational therapy
Assistive devices and mobility equipment (a wheelchair, or walking aids)

Treatment for bowel and urinary problems

NHS, 2020

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Prevention

CDC and WHO recommends that every woman of childbearing age take 400mcg of supplemental folic acid daily. Rationale is that by the time a woman knows she is pregnant the neural tube has already formed.
Women at higher risk of having a child with spina bifida need to take a higher dose of 5 milligram of folic acid daily
Talk to doctor or pharmacist about any prescription and over-the-counter drugs, vitamins, and dietary or herbal supplements
Control diabetes or obesity before pregnancy
Avoid overheating the body (Treat any fever)

CDC, 2020

NHS, 2020

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Critical Thinking Question

How much folic acid should a women of childbearing age consume to prevent Neural tube defects?

400 micrograms (mcg) of folic acid everyday
200 mcg of folic acid every everyday
400 milligram of folic acid everyday
100 mcg of folic acid every day

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Nursing Management

Assessment:

Physical Examination:

Head circumference measurement
Fontanelle
Neurologic assessment
Observe for reflexes and leg movement
Checking skin for sores, ulcers, wounds
Assessing mobility and physical activity
Vital signs

CDC, 2020

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Nursing Management

Care of Myelomeningocele Sac:

Radiant warmer or incubator without clothes to maintain the temperature
Close observation of sac for the leaks, abrasions and signs of infection
The dressing over defect requires frequent moistening
Before closure, cover the sac with a sterile non adherent dressing moistened in a warm sterile solution to prevent drying
Change dressing every 2-4 hrs
Must be carefully cleaned if it becomes soiled or contaminated

Hockenberry & Wilson, 2007

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Nursing Management

Positioning:

Before surgery the infant should be kept in prone position to minimize risk of trauma
Variety of aides, diaper rolls, pads, sandbags and appliances are used to maintained desire position

Latex Allergy:

Many infants with spina bifida are allergic to latex, or natural rubber

Hockenberry & Wilson, 2007

CDC, 2020

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Nursing Management

General Care:

Keep skin dry and free of infection
Pressure reducing mattress to prevent pressure sores
Physical therapy
Promote urinary elimination by assessing urinary function, performing clean intermittent catheterization
Pomote bowel elimination through bowel training
Adequate nutrition

Hockenberry & Wilson, 2007

CDC, 2020

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Nursing Management

Family support and home care:

Parents and caregivers can help protect the infant skin by:

Checking the infant’s skin every day for redness, including under braces
Avoid hot bath water
Avoid long exposure to the sun
Avoid sitting or lying in one position for too long

CDC, 2020

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Nursing Management

Family Education:

Family needs to know neural tube defects are lifelong disorders with long term effects.
Educate about positioning, feeding, promoting urinary elimination through clean intermittent catheterization, promoting bowel management, signs and symptoms of increased intracranial pressure.
Child may require multiple surgeries throughout lifetime.
Referral to support groups and community resources.

CDC, 2020

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Nursing Alert

Avoid using rectal temperature in infants with spina bifida. The bowel sphincter functions is frequently affected and the thermometer may cause irritation and rectal prolapse.

Women of child bearing age should be educated about taking adequate folic acid to prevent neural tube defects.

Hockenberry & Wilson, 2007

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What Would the Nurse Do?

What are the nursing care of a child with meningomyelocele?

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Red Flags

Be sure to assess a newborn for closure of the neural tube. A ‘spinal dimple’ may indicate a defect.

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Cultural Considerations

Religion, culture, beliefs, and ethnic customs can influence how families understand and use health concepts:

Health beliefs: In some cultures talking about a possible poor health outcome will cause that outcome to occur
Health customs: In some cultures family members play a large role in health care decision-making
Ethnic customs: Differing gender roles may determine who makes decisions about accepting & following treatment recommendations

AHRQ, 2020

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Cultural Considerations (Continued)

Religion, culture, beliefs, and ethnic customs can influence how families understand and use health concepts:

Religious beliefs: Faith and spiritual beliefs may effect health seeking behavior and willingness to accept treatment.
Dietary customs: Dietary advice may be difficult to follow if it does not fit the foods or cooking methods of the family
Interpersonal customs: Eye contact or physical touch may be ok in some cultures but inappropriate or offensive in others.

AHRQ, 2020

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References

Better Health. (2011 May 31). Central Nervous System Birth Defects. https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/central-nervous-system-birth-defects

CDC(a). (2020 September 3). What is Spina Bifida?. https://www.cdc.gov/ncbddd/spinabifida/facts.html

CDC (b). (2020 September 3). Living with Spina Bifida: Infants.https://www.cdc.gov/ncbddd/spinabifida/infant.html

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References

CDC (d). (2020).5 Ways to Lower the Risk of Having a Pregnancy Affected by a Neural Tube Defect.https://www.cdc.gov/ncbddd/birthdefects/5-ways-to-lower-the-risk.html#:~:text=For%20women%20with%20type%201,%2C%20stillbirth%2C%20and%20preterm%20birth

Hockenberry, M. J. & Wilson, D. (2007). WONG’S Nursing Care of Infants and Children. 8th edi. Mosby

Liao, Y., Wang, J., Li, X., Guo, Y., & Zheng, X. (2009). Identifying environmental risk factors for human neural tube defects before and after folic acid supplementation. BMC public health, 9, 391. https://doi.org/10.1186/1471-2458-9-391

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References

March of Dimes. (2021). Neural Tube Defects. https://www.marchofdimes.org/complications/neural-tube-defects.aspx

MedlinePlus. (2021 October 26). Neural Tube Defects. https://medlineplus.gov/neuraltubedefects.html#:~:text=Neural%20tube%20defects%20are%20birth,column%20doesn%27t%20close%20completely

NIH. (2018). About Neural Tube Defects (NTDs).https://www.nichd.nih.gov/health/topics/ntds/conditioninfo

NHS. (2020 April 20). Overview Spina Bifida. https://www.nhs.uk/conditions/spina-bifida/

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