current problems with the spina bifida diagnosis

CURRENT PROBLEMS WITH THE

DIAGNOSIS

presentation created for review by Florida Congressman Mica’s Office

SPINA BIFIDA

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

is the most common permanently disabling birth defect.

SPINA BIFIDA

17 weeks into our pregnancy we learned our baby would be born with

SPINA BIFIDA

Prenatal testing and ultrasounds often diagnose

before a baby is ever born.SPINA BIFIDA

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

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”.

Parents receiving a spina bifida diagnosis are often provided

or inaccurate information that only focuses on what is “wrong”. Information provided

is not enough to help parents make an informed decision.

OUTDATED INFORMATION

Most information provided does not bring hope to a family to see what

is really like for families.LIVING WITH SPINA BIFIDA

This is what a person wanting to learn more about

will find on google.SPINA BIFIDA

When I first learned our baby had

everything I learned seemed so horrifying.SPINA BIFIDA

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

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

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

With appropriate medical care

and hydrocephalus patients can be cared for, unlike in 3rd world countries.SPINA BIFIDA

DIAGNOSIS

PROBLEMS WITH THE

• Families are provided outdated or inaccurate information. In some cases they are presented no information beyond a verbal diagnosis.

• Some parents are encouraged to terminate their pregnancy due to a spina bifida diagnosis.

• Parents aren’t always referred to medical specialists who are experts in care of individuals living with spina bifida.

• Parents aren’t always connected to the spina bifida clinic that coordinates care of patients are among the best advocates to help bring hope to a family until after a baby is born.

• Parents aren’t always connected to their local spina bifida association or support group to receive support and learn from families. Spina Bifida families surveyed unaninimously agreed this is among a family’s strongest resources after receiving a diagnosis.

SPINA BIFIDA

This past week 23 central Florida families participated in a survey to reflect on their own experiences regarding the spina bifida diagnosis.

This past week 23 central Florida families participated in a survey to reflect on their own experiences regarding the spina bifida diagnosis.

This past week 23 central Florida families participated in a survey to reflect on their own experiences regarding the spina bifida diagnosis.

I personally struggled with the “options” I was given because I could not see past how much I was learning was wrong with my baby.

I DIDN’T KNOW IF I COULD CARE FOR A CHILD WITH SPINA BIFIDA.

We came very close to giving up on our son’s life. It was hard to think past how much could be wrong with our baby.

TERMINATION IS AN OPTION PRESENTED TO ALL PATIENTS.

We chose to give our son

He was born with an opening in his back that was repaired just four after he was born.

A “CHANCE” AT LIFE.

He spent 18 days in the NICU. We learned quickly that

came with so many uncertainities.SPINA BIFIDA

We learned that his

scar would become a sign of his beauty and strength.SPINA BIFIDA

By the time he was a week old

HE RECEIVED HIS 1ST SHUNT

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

After the medical moments settled down,I learned he was as beautiful as any other newborn.

HE WAS BORN PERFECTLY MADE.

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.

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.

Most days our son is like most other kids 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.

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.

(something I wish all medical professionals would do when deliving the diagnosis to families.)

I WILL ATTEMPT TO PERSONALIZE THE DIAGNOSIS.

Though they face similar challenges, no two individuals face the same identical challenges.

SPINA BIFIDA IS A SNOWFLAKE CONDITION

Most born with spina bifida face

MOBILITY CHALLENGES.

Depending on their level of paralysis some may require

This doesn’t prevent them from having great life experiences.MOBILITY DEVICES.

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.

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

Most living with spina bifida also participate in

COUNTLESS HOURS OF THERAPY.

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.

Most who were born with spina bifida have been through so much and often have determined & fearless spirits.

THEY ARE FEARLESS.

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

THEY ARE BRAVE.

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

THEY ARE BEAUTIFUL.

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

THEY ARE CURIOUS.

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.

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.

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.

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.

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.

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.

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.

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.

RAISING A CHILD WITH SPINA BIFIDA IS POSSIBLE.

REVISE FLORIDA STATUTE 383.141 I recommend Florida statute 383.141 pertaining to the prenatal diagnosis of adverse conditions include a reference to spina bifida, as it includes down syndrome.

I recommend it include that all medical professionals delivering a spina bifida diagnosis be required to give patients an accurate and up to date explanation of spina bifida. Medical professionals should not encourage patients to terminate a pregnancy as a result of a spina bifida diagnosis. Information should not be pro-life or pro-choice but instead it should be pro-information to help a family make an informed decision.

The Florida statute should also recommend that all families be connected with a pediatric neurosurgeon, their local spina bifida clinic, and their local spina bifida association or spina bifida support group as soon as possible after receiving the diagnosis.

SPINA BIFIDARECOMMENDATIONS TO IMPROVE THE

DIAGNOSIS

SPINA BIFIDA ASSOCIATION OF CENTRAL FLORIDAwww.sbacentralflorida.orgwww.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.