Meet Stella

It’s #SpinaBifidaAwarenessMonth. In this video, follow Miracle Child Stella as she receives treatment at Penn State Children’s Hospital for her spina bifida and related conditions. She’s the reason why #kidscantwait for the pandemic to be over. She continues to need medical treatment now.

Her mom Sophie also assembled a few facts about spina bifida:

Spina bifida occurs when a baby’s spine does not properly close during development. This happens within the first 28 days of pregnancy, before most women know they are pregnant.

Spina bifida is known as a “snowflake condition” because no two cases are alike.  For example, we have met kids with lesions around the same level as Stella.  Some of them have less health complications than Stella and more movement while others have more complications and less movement.

Although taking folic acid can prevent spina bifida, it is NOT 100% effective.  About 30% of women who give birth to children with spina bifida were taking the recommended amount of folic acid when their babies were conceived.

About 80% of people (including Stella) with spina bifida have hydrocephalus. Hydrocephalus is the buildup of cerebrospinal fluid in a person’s brain and is treated with a shunt. Shunts save lives, but they have terrible fail rates. This is why research and development of a new, improved shunt is SO important.

Sources: CDC and Spina Bifida Association

Learn more about spina bifida care at Penn State Children’s Hospital.