Spina Bifida Financial Support

Spina bifida is a lifelong condition that affects thousands of families across the U.S. The emotional and financial challenges that come with ongoing medical care, therapies, and support services can be overwhelming.

Understanding the true costs of care, from surgeries to everyday medical needs, is the first step toward finding the help and resources your family needs to navigate the journey. Connect with Help Hope Live and learn about fundraising options that can make a significant difference in managing the emotional and financial burdens of spina bifid

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.

According to the Spina Bifida Association of North Texas, the average lifetime cost of care for someone living with spina bifida is over $791,000.

An older study from 2003 found that the medical treatment cost gap between individuals with and without spina bifida started at over $41,000 at birth, reached over $13,300 between ages 18-44, and reached over $10,100 at ages 45-64.

Overall, the study concluded that “adults with spina bifida had average medical expenditures three to six times greater than adults without spina bifida in the privately insured population.”

Additional Expenses for Spina Bifida Care

Common expenses associated with spina bifida care include:

• Health insurance premiums, deductibles, and co-payments
• Medications
• 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:

1. Complete a short campaign request at helphopelive.org/get-started/apply
2. We will contact you if community-based fundraising is a possible option
3. You’ll be paired with a Client Services Coordinator
4. 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