What is Spina Bifida?

Spina Bifida is is a congenital birth condition caused by the incomplete closure of the the embryonic neural tube. Some of the vertebrae that cover the spinal cord are not fully formed and remain unfused and open. A large opening allows a portion of the spinal cord to protrude through the opening in the bones.

Types of Spina Bifida

There are four types of spina bifida: occulta, closed neural tube defects, meningocele, and myelomeningocele.

Occulta is the mildest and most common form, while Myelomeningocele is the most serious form and leads to disability in most affected individuals.

Tehya was born with the most serious form - Lipomyelomeningocele.

• Lipo - Fatty Tumor
• Myelo - Spinal Cord
• Meningo - Meninges or outer covering of the spinal cord
• Cele - Sac
  

To date, there is still no cure for Spina Bifida despite the fact that approximately 1 in 1,000 children are born with this condition. Many children born with Spina Bifida often have additional medical conditions such as tethered cord syndrome, syringomyelia, scoliosis, hydrocephalus and Chiari Malformation - to name a few.

Annual Spina Bifida Physician & Patient Conference

Tehyathon hopes to host an annual conference where surgeons and specialists gather to discuss new treatments and exchange information with one another. We will also offer presentations by keynote speakers, researchers, surgeons, and specialists who are experts in the field of Spina Bifida and it's related conditions.

Online Resource Database

Tehyathon believes that establishing an annual conference and an online database of medical specialists, resources, suppliers, hospitals and support groups will be vital in bringing the Spina Bifida community together. As one strong, knowledgeable group, Spina Bifida patients and families can provide care for themselves, while assisting the medical community in their efforts to further technology and treatments to one day minimize or cure Spina Bifida and it’s related conditions.

We are currently planning and developing this online resource and hope to have it available in the coming months.