Spina Bifida Financial Support
Medical care costs from spina bifida can last a lifetime. Our nonprofit can provide financial assistance through community-based fundraising.
What Is Spina Bifida?
According to Mayo Clinic, spina bifida is a congenital disability that occurs when the spine and spinal cord don’t form the way they should. It’s a type of neural tube defect. The neural tube is the structure in a developing embryo that becomes the baby’s brain, spinal cord, and tissues enclose and protect them.
The neural tube forms early in pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube doesn’t close or develop correctly, causing problems in the spinal cord and the spine’s bones.
Spina bifida can range from mild to severe, depending on the type of defect, size, location and complications. When necessary, early treatment for spina bifida involves surgery — although such treatment doesn’t always completely resolve the problem.
What Are the Types of Spina Bifida?
Spina Bifida Occulta
Occulta means hidden. It’s the mildest and most common type. Spina bifida occulta results in a small separation or gap in one or more of the bones of the spine (vertebrae).
Many people with spina bifida occulta don’t know they are living with this diagnosis unless the condition is discovered during an imaging test for unrelated reasons. Several developmental issues have higher instances of occurrence among those who live with spina bifida occulta.
The most severe type of spina bifida is myelomeningocele. This condition is frequently referred to as open spina bifida. In this instance, there is an opening along several spinal vertebrae. As a result of this opening, the membranes and spinal nerves push through the opening and create a sac with exposed tissues and nerves. This leaves the child susceptible to dangerous infections and may cause paralysis.
This rare type of spina bifida is characterized by a sac of spinal fluid bulging through an opening in the spine. No nerves are affected in this type, and the spinal cord isn’t in the fluid sac. Babies with meningocele may have some minor problems with functioning, including those involving the bladder and bowels.
What Are the Treatments for Children Born with Spina Bifida?
The severity and type of condition determine the treatment for spina bifida. Below are the ways in which spina bifida is treated before or soon after birth.
- A child with Meningomyelocele usually is operated on within two to three days of birth. This prevents infections and helps save the spinal cord from more damage.
- A child with Meningocele usually is treated with surgery, and often, the child is not paralyzed. Most children with this condition grow up without complications, but a doctor should check them because they could have other serious problems, too.
- A child with occult spinal dysraphism should see a surgeon. Most experts think that surgery is needed early to keep nerves and the brain from becoming more damaged as the child grows.
- Spina bifida occulta typically does not require treatment.
Average Cost of Treatments for Babies with Spina Bifida
- Hospital costs for a baby born with spina bifida were about $21,900 (ranging up to $1,350,700) in the first year of life.
- About 18% of babies with spina bifida had more than three hospital stays in their first year of life.
- Median number of hospital stays per infant with spina bifida: 2 (range: 1-12 stays)
- Median number of total days in the hospital (for hospital stays started in the first year of life): 14 (range: 0-476 days)
- Infants who had private insurance only or who had a mix of public and private insurance had fewer hospital stays than infants who had public insurance only.
Average Costs for Adults with Spina Bifida
Adults with spina bifida may face a wide range of medical and related expenses to maintain their health, mobility, and independence as they age. Common expenses include:
- Health insurance premiums, deductibles, and co-payments
- Travel expenses for rehabilitation and treatment
- Relocation or moving expenses related to the diagnosis (such as in the case of moving to be closer to a rehabilitation center or hospital for treatment)
- Temporary housing due to relocation
- Mileage, tolls, and parking fees for visits to rehabilitation center or hospital
- Specialized wheelchairs and other durable medical equipment
- Specially equipped vans and durable medical equipment
- Home modification related to the diagnosis
- Home health care services
- Assistive technology
- Physical therapy and vocational rehabilitation
- Experimental treatments
Turn to Help Hope Live for Spina Bifida Financial Support
Establishing greater support for spina bifida patients is one of our goals at Help Hope Live. Through community-based fundraising, our nonprofit organization is dedicated to helping those in need raise funds for medical treatment costs associated with surgery and ongoing support for patients with spina bifida.
How Does Spina Bifida Fundraising Work?
The fundraising process with our nonprofit starts with a few simple steps:
- Complete a short campaign request at helphopelive.org/get-started/apply
- We will contact you if community-based fundraising is a possible option
- You’ll be paired with a Client Services Coordinator
- Your Coordinator will provide you with one-on-one fundraising help, including personalized materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and much more
How Is Help Hope Live Different from GoFundMe?
- Verifying your medical need for complete donor confidence
- Enabling donations that are tax-deductible
- Providing one-on-one fundraising help
- Managing all funds raised to protect your state-based benefits (funds raised are not considered personal income/assets to you)
- Paying bills directly, allowing you to focus on treatment and recovery
We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.
Does Community-Based Fundraising Work?
Here are a few Help Hope Live fundraising success stories:
Nick Hansberger is a well-known and well-loved member of his community and a hardworking professional with two jobs. Born with spina bifida, Nick has been experiencing deteriorating mobility and independence—by 2021, he was no longer able to walk or operate a vehicle, even with adaptive controls.
As a result of his mobility restrictions, Nick uses his motorized wheelchair to travel the mile-and-a-half to each job, even through inclement weather and physical discomfort.
His community started a fundraising campaign with Help Hope Live to bring reliable transportation within reach for Nick. They have nearly surpassed their first $50,000 fundraising goal in just four months of fundraising.
“I can’t believe this is happening—it has brought hope back into our lives.”
A mother of two young children, Viviane MacDonald has been living with an ALS diagnosis since 2018. Help Hope Live’s press outreach efforts on Viviane’s behalf led to an overwhelming response from the community with over $18,000 raised in one week and more than $50,000 raised in one month. Funds raised will be critical to Viviane’s comfort, mobility, and home accessibility.
MOST COMMON SPINA BIFIDA EXPENSES
Ready to Get Started?
If you choose to fundraise with our nonprofit, here’s how the process will look:
1. APPLY for assistance
2. YOU’LL BE PAIRED with a Client Services Coordinator
3. YOUR COORDINATOR will provide you with one-on-one fundraising help, including personalized fundraising materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and more.
Need Other Financial Help Options?
For alternatives to fundraising, you can find information on a variety of other financial assistance options. Please view our Catastrophic Illness Resource Directory for insight into sources of direct financial aid, support groups, and other resources for spina bifida patients and their families.