A presentation to personalize the spina bifida diagnosis - to help others learn a more personal understanding of spina bifida

1. REDEFINING
The world’s most common
permanently disabling birth defect.
SPINA BIFIDA

2. There are over 166,000 Americans living with
and over 500,000 worldwide.
Over 6,000 people in Florida are affected by
the birth defect.
SPINA BIFIDA

3. A personal reflection of
SPINA BIFIDA

4. 17 weeks into our pregnancy we learned our baby would be born with
SPINA BIFIDA

5. Prenatal testing and ultrasounds often diagnose
before a baby is ever born.
SPINA BIFIDA

6. As women learn what is “wrong” with their baby they are presented
with life changing decisions and options.
their pregnancy due to a spina bifida diagnosis.
According to a Wayne State University study,
An estimated 67% terminate

7. When I learned our baby would be born with spina bifida,
one of the first things my doctor said was
It can be scary to learn just how much might be “wrong”.
Do NOT google “spina bifida”.

8. This is what a person wanting to learn more about
will find on google.
SPINA BIFIDA

9. When I first learned our baby had
everything I learned seemed so horrifying.
SPINA BIFIDA

10. is a complex birth defect. SOME OF THE COMMON ISSUES
• Mobility Challenges
• Hydrocephalus
• Chiari malformation
• Bladder challenges
• Bowel challenges
• Some have club feet
orthopedic issues
• Some experience epilepsy/seizures
• osteoporisis scoliosis affect some
• some experience depression
• weight management challenges
• kidney failure
• diabetes
• learning challenges
SPINA BIFIDA

11. occurs in most cases of spina bifida.
Hydrocephalus is fluid built up on the brain.
Due to the defect, CSF fluid does not drain properly.
This condition can be just as scary as spina bifida.
Hydrocephalus can cause brain damage.
HYDROCEPHALUS

12. Before the invention of a shunt
This is what a person will find searching for hydrocephalus on google.
patients often didn’t live past childhood and many died as infants.
SPINA BIFIDA

13. With appropriate medical care
and hydrocephalus patients can be cared for, unlike in 3rd world countries.
SPINA BIFIDA

14. Our son was born with
he was born with an opening in his back that
was repaired just four after he was born.
SPINA BIFIDA

15. He spent 18 days in the NICU. We learned quickly that
came with so many uncertainities.
SPINA BIFIDA

16. We learned that his
scar would become a sign of his beauty and strength.
SPINA BIFIDA

17. By the time he was a week old
HE RECEIVED HIS 1ST SHUNT

18. This device is what my son relies on to live.
8 of my son’s 12 surgeries have been shunt related.
IT HAS A 50% MALFUNCTION RATE

19. After the medical moments settled down,
I learned he was as beautiful as any other newborn.
HE WAS BORN PERFECTLY MADE.

20. I spent so much time before he was born terrified and
fearing spina bifida. I knew he would change our lives.
You learn to appreciate every single moment a little more.
SPINA BIFIDA IS LIFE CHANGING.

21. It didn’t take long before we recognized
something special in our son.
They are resilient through so many medical challenges.
THESE KIDS HAVE AMAZING SPIRITS.

22. Most days our son is like most other kid his age.
He loves to swim. He loves football, video games, and watching cartoons.
After 12 surgeries, spending a total of 6 weeks of his life
hospitalized, undergoing hundreds of tests and therapies, and
going to countless doctor’s appointments – we’ve realized
SPINA BIFIDA DOESN’T DEFINE HIS LIFE.

23. After raising a child with spina bifida and spending the past 4 years
creating awareness of spina bifida, I’ve learned a lot about this birth
defect that can’t be found on google or in the medical books.
I WILL ATTEMPT TO PERSONALIZE THE DIAGNOSIS.

24. Though they face similar challenges, no two individuals
face the same identical challenges.
SPINA BIFIDA IS A SNOWFLAKE CONDITION

25. Most born with spina bifida face
MOBILITY CHALLENGES.

26. Depending on their level of paralysis some may require
This doesn’t prevent them from having great life experiences.
MOBILITY DEVICES.

27. Some are born paralyzed, but just because they have spina
bifida doesn’t mean they’ll never walk.
MANY FEAR THEIR CHILD MAY NOT WALK.

28. often rely on braces, walkers, crutches or wheelchairs for mobility.
THOSE LIVING WITH SPINA BIFIDA

29. Most living with spina bifida also participate in
COUNTLESS HOURS OF THERAPY.

30. If a child with spina bifida learns to walk,
Complications affecting the spine can affect their mobility.
It helps us remember to appreciate every moment a little more.
THEY MAY NOT ALWAYS WALK.

31. Most who were born with spina bifida have been through so much
and often have determined fearless spirits.
THEY ARE FEARLESS.

32. Some living with spina bifida only go through a couple surgeries in
their life, others go through many many more.
THEY ARE BRAVE.

33. This birth defect doesn’t prevent a child from being beautiful.
They continue to remind us that they are wonderfully made.
THEY ARE BEAUTIFUL.

34. Individuals with spina bifida often experience learning disabilities.
This doesn’t keep them from being curious or from having brilliant minds.
THEY ARE CURIOUS.

35. Despite how much most of kids living with spina bifida experience,
most continue to smile and have the happiest spirits.
THEY ARE THE HAPPIEST KIDS.

36. It is not uncommon for individuals with spina bifida to be born with
club feet or to have orthopedic issues as they grow.
MANY FACE ORTHOPEDIC ISSUES.

37. Over 70% have experienced a reaction to latex.
It is advised that all individuals with spina bifida take latex precautions.
©Janet Ramos
MOST ARE ALLERGIC TO LATEX.

38. Most children are seen by a half dozen specialists.
Their care can be extensive and they require unconditional love support.
THERE IS NO CURE FOR SPINA BIFIDA.

39. It is estimated in a recent SBAA insights magazine that medical costs of
children with spina bifida is 13 times greater than an average child.
FAMILIES EXPERIENCE HIGH MEDICAL COSTS.

40. Many adults with spina bifida are living longer than expected.
Many factors influence why adults face so many healthcare challenges.
THERE ARE CHALLENGES IN ADULT HEALTHCARE.

41. It is approximated that 1 in 1,500 babies are born with spina bifida.
In the U.S. approximately 1,500 babies are born each year with spina bifida.
LESS THAN 1% ARE BORN WITH SPINA BIFIDA.

42. I hope if you’ve learned one thing today, it’s that
The journey may not always be easy, but it’s totally worth it.
THERE’S NO REASON TO BE AFRAID OF SPINA BIFIDA.

43. SPINA BIFIDA ASSOCIATION OF CENTRAL FLORIDA
www.sbacentralflorida.org
www.facebook.com/sbacfl
SUPER CHANCE
www.facebook.com/superchancekern
AMANDA KERN PHOTOGRAPHY
www.facebook.com/amandakernphotography
REDEFINING SPINA BIFIDA
www.facebook.com/redefiningspinabifida
AMANDA KERN
email: amanda@amandakern.com
QUESTIONS?
THANK YOU.