Journal of Pediatric Surgical Nursing

Spina bifida (SB) is a birth defect involving the neural tube of the spine. The severity of the condition depends on the extent of the defect. The most severe cases of SB are debilitating and can significantly affect the quality of life of babies born with the defect.

Complications of SB can include mobility issues, orthopedic abnormalities, elimination impairments, infections, cognitive delays, and frequent hospitalizations, and these can span the lifetime of the child. The complications and needs associated with SB become very specific as the child reaches adulthood. According to the Centers for Disease Control and Prevention, approximately one in every 2,758 babies born annually in the United States are diagnosed with SB. Learning that a child will be born with a birth defect can be devastating for parents. Several decisions need to be made at birth and as the child grows. Many parents facing such news are overwhelmed and experience a range of emotions. The needs of parents caring for children with SB will vary based on their understanding of the disease process, ability to access resources, availability of a support system, and the capacity to cope with the challenges that arise when caring for a child born with this condition. Nurses must be diligent in exploring the needs of this parent population. This article is intended to raise awareness among nurses regarding parental needs so that they can support and assist parents in developing more effective ways to navigate through their journey.

Spina bifida continues to affect more than 1,000 babies annually in the United States. A possible genetic variant may be linked to spina bifida. Prevention includes an adequate amount of folate and folic acid supplements in women capable of pregnancy.

Spina bifida is one of the congenital neural tube defects that can lead to loss of bladder control, also known as neurogenic bladder. This can lead to recurrent urinary tract infections and subsequent renal function decline if not properly managed. Proper management may include pharmacological care that aims to prevent improper drainage of the bladder directly by utilizing agents such as anticholinergics, urinary antispasmodics, and botulism toxins. In addition to direct care, patients with neurogenic bladder also may require bowel regimens because of concurrent instances of neurogenic bowels.

Myelomeningocele is a complex medical diagnosis that, when discovered prenatally, allows for the option of maternal–fetal surgery aimed at improving long-term outcomes. Significant advancements have been made in prenatal myelomeningocele surgical techniques that reduce morbidity and mortality for the pregnant person and their child. The pathway to prenatal surgery consists of in-depth obstetric and fetal assessment partnered with intense family education and counseling. Fetal care centers provide specialized care of families undergoing assessment, diagnosis, and prenatal and postnatal treatment of spina bifida. The counseling process in a fetal care center is unique, comprehensive, and directed to ensure families receive multidisciplinary care and support that is individualized to their specific needs and concerns.