In this article, we will discuss the challenges new parents may encounter when raising a child with Spina Bifida (SB). This guide aims to support new parents by providing insights and practical advice. It’s important to understand that Spina Bifida presents differently in each child, so your child may experience some or all of these challenges.
When you first learn that your baby has SB, there is a lot to understand and many decisions to make quickly. Most diagnoses are made by obstetricians or maternal-fetal medicine specialists. However, it’s crucial to consult a SB expert, such as a pediatric neurosurgeon, or visit a children’s hospital. This will help you gain a comprehensive understanding of your baby’s prognosis (how he or she will be affected) and explore the best options for your child’s care and your family’s needs.
What is Spina Bifida?
Spina Bifida occurs when a baby’s developing spine (neural tube) fails to close completely during the early weeks of pregnancy. Each case is unique, with the effects varying depending on the size, location, type of opening, and the specific nerves involved.
The most common type of SB diagnosed during pregnancy is myelomeningocele. This “open” form of SB involves an opening in the skin over a fluid-filled sac that contains part of the spinal cord and nerves. Surgery is necessary to close this opening and protect the spinal cord from infection and further damage. When people refer to SB, they are typically talking about myelomeningocele.
There are also less common types of SB that are closed (covered by skin), yet still affect the spinal cord. While these typically require treatment, it is not always urgent.
Spina Bifida Occulta, often called “hidden” Spina Bifida, features a small gap in the spinal bones covered by skin, with the spinal cord usually remaining unaffected. This type is rarely detected before birth and usually requires no treatment.
What causes Spina Bifida?
Spina Bifida can occur regardless of parents’ actions before or during pregnancy. A baby’s development is complex, with many opportunities for variations. Disability is a natural form of diversity that has existed throughout human history. SB results from a combination of genetic, nutrional and environmental factors around the fourth week of pregnancy, often before women know they are pregnant. Researchers still have much to learn about the genetics of SB. Taking folic acid (found in most multivitamins and prenatal vitamins) for one to three months before conception may help reduce the risk, but it cannot entirely prevent SB. It is not caused by anything you did or did not do.
Spina Bifida diagnoses during pregnancy?
A routine Maternal Serum Alpha-Fetoprotein (AFP) blood test, conducted between the 15th and 20th weeks of pregnancy, can indicate an increased likelihood of neural tube defects like Spina Bifida.
Diagnosis is typically made during an ultrasound, which may reveal spinal markers like missing or fragmented vertebrae, and brain markers such as ventriculomegaly (enlarged ventricles), a distinctive fetal skull shape known as the “lemon sign,” and crowding of the cerebellum, referred to as the “banana sign.”
Sometimes, doctors perform an amniocentesis, which involves taking a small sample of the fluid surrounding the baby in the uterus. This fluid is tested for cerebrospinal fluid (CSF), the liquid that surrounds the baby’s brain and spine. If CSF is present, it indicates that the baby’s back is “open” rather than covered by skin. You can also analyze the fluid for other genetic conditions.
A fetal MRI can provide a clearer view of the lesion’s size, location, and specific details.
What is it like to live with Spina Bifida?
Each person with Spina Bifida is unique. Just as with any child, it’s impossible to fully predict their physical and medical outcomes before or at birth. Some individuals may have significant disabilities, while others may be less affected. Over the years, medical advancements have greatly improved health, life expectancy, and quality of life for those with SB. Additionally, cultural attitudes toward people with disabilities have evolved, leading to better services, greater inclusion, and increased acceptance.
At diagnosis, doctors may inform parents that their child might have a poor quality of life, but this assessment is subjective. Many factors influence this outcome, including the country of birth, access to resources, financial stability, and insurance coverage (which is lacking in India).
Just like everyone else, people with Spina Bifida have different interests, personalities, ambitions, and talents. Parents can help their children with Spina Bifida live full lives by encouraging independence, making sure they have good medical care, and finding support from the Spina Bifida community. Many people with Spina Bifida earn advanced education, have careers, build families of their own, travel, play sports, play instruments, find meaningful hobbies, crack jokes, have fun, and add tremendous value to their communities. Spina Bifida influences their lives but does not define them.
The Spina Bifida community offers support, understanding, and acceptance. Your healthcare providers, therapists, and teachers become like family. Connecting with other families helps both you and your child feel seen and understood. At SASHA, we create a safe space for discussion and sharing. Our online groups connect parents of children with SB and adults who have grown up with the condition.
How does Spina Bifida affect people?
Each case of Spina Bifida is unique, though some common challenges exist. Various treatment options are available to help your child achieve their full potential.
- Lifespan Outlook – Healthcare advancements have significantly improved the length and quality of life for people with SB. Today, babies born with SB are generally expected to live long lives. Life expectancy depends on various factors, including any additional conditions present at birth and the quality of healthcare received throughout life. While SB does not cause active physical decline, its effects on the body can change with growth and secondary health issues.
- Learning Abilities – People with SB exhibit a wide range of intellectual abilities, similar to the general population. They might face challenges with math or executive functioning skills, such as attention and organization. Developmental pediatricians, child psychologists and neuropsychologists assist parents and teachers in understanding each child’s learning style and addressing these challenges effectively.
- Hydrocephalus – When the spinal cord gets pulled into the sac on a baby’s back, it can tug on the cerebellum, narrowing the path for cerebrospinal fluid (CSF) to flow between the brain and spine. This can cause CSF to build up in the ventricles, enlarging them—a condition known as ventriculomegaly. Babies’ heads are flexible and can accommodate some extra fluid, but excessive fluid can lead to brain pressure, known as hydrocephalus. This condition is common with the open type of Spina Bifida but is very treatable. Two main treatments help reroute the extra fluid so the brain can continue to grow well. A shunt directs CSF to the abdomen or another area of the body, while an endoscopic third ventriculostomy (ETV) creates an extra opening in the brain to allow more fluid to drain. Sometimes, a choroid plexus cauterization (CPC) is also needed to reduce fluid production. A neurosurgeon can help determine the best option for your baby.
- Neurogenic Bowel and Bladder – Damage to the lower spinal nerves causes varying degrees of bowel and bladder dysfunction. While the impact differs for each individual, numerous treatments exist to maintain bladder and bowel health, enhance continence (staying dry and clean) when age-appropriate, and foster a child’s independence in self-care. Urologists and gastroenterologists monitor and treat these conditions.
- Mobility – Spina Bifida often causes leg weakness by affecting the nerves in the lower body. Many children can walk, either independently or with supports like leg braces, walkers, or crutches. Some children walk full-time, while others use a wheelchair for longer distances. Those with higher spinal openings may primarily use a wheelchair for mobility. A team of specialists, including an orthopedist, physical therapist, orthotist, and others, can help determine the best way to get your baby moving.
- Independence – With training and encouragement, most people with Spina Bifida can become independent in their own care. Over time, you will build a support team of doctors, nurses, social workers, teachers, support organizations, and other families to assist you and your child. Working together often leads to positive outcomes in independent living, employment, and other quality of life measures. Independence doesn’t mean not needing support; it means having choices in what we do and how we live. Parents can help children with Spina Bifida achieve this sense of independence, regardless of their physical abilities.
What are the choices for parents expecting babies with Spina Bifida?
Meeting with providers who specialize in Spina Bifida is crucial to understanding all the available and appropriate options for you and your baby.
Surgical Options:
- Prenatal closure – Some hospitals offer fetal surgery to close the baby’s back while you are still pregnant, before 26 weeks of gestation. Research shows this type of closure can reduce the risk of needing a shunt for hydrocephalus and increase the chances of walking independently. Not everyone qualifies for fetal surgery, and there are several risks, including surgical complications for the mother and a high rate of preterm birth. A fetal surgery evaluation at a hospital that performs the procedure will help determine if you and your baby qualify and if it is the best choice for you. This option is not availabe to everyone in India as it involves resources of all kinds.
- Postnatal closure – Another treatment for babies with Spina Bifida involves surgery to close the spinal opening within 72 hours after birth. Discuss with your obstetrician and the baby’s neurosurgeon whether a caesarean section or vaginal delivery is best for you and your baby with this option.
Other Options:
Termination – You may also talk to your health providers about other options like termination (abortion). This is a deeply personal decision, but abortion can be a viable option to prevent an unborn child from facing the hardships of life with Spina Bifida. It’s important to make this decision based on your child’s future and the struggles they may encounter, rather than religious beliefs. While some people, particularly those who follow Christianity, may view abortion as wrong, it’s crucial to consider the unique challenges your child might face. As a parent, you can provide emotional support, but your child will have to confront many physical hardships on their own. Additionally, parents won’t always be there, and finding love and support can be challenging for individuals with disabilities.
Spina Bifida child’s care after birth
Whether the baby undergoes prenatal or postnatal closure, most will be monitored in the neonatal intensive care unit (NICU) after birth. The length of stay will vary depending on the baby’s specific needs.
After the baby is discharged from the hospital, regular follow-up appointments with a pediatric neurosurgeon, orthopedist, urologist, and other necessary specialists, such as a gastroenterologist and pediatrician, will be essential. Consistent care throughout life will enhance both health and quality of life.
Please Note
The information provided on our website is not intended as medical advice for any individual. Since specific cases may differ from the general information presented, SASHA recommends consulting a qualified medical or other professional for personalized advice.
About the author
Raul/DJ Vivek
Meet Vivek Bharadwaj, a remarkable individual who has defied the odds and soared to new heights despite living with Spina bifida. As the founder of the Sasha Foundation, Vivek tirelessly advocates for others facing similar challenges. His unwavering commitment to support, awareness, and empowerment had made a lasting impact on the Spina bifida community.
