Forward/Introduction
Ch 1: Emotions:
Fear/Imagination
Guilt
Anger
Sadness
Numbness
Ch2: Spina Bifida: what it means for you and your child: the facts
An
Interview with Dr. Gathleen Etienne
The parts of a spine
Cervical
Thoracic
Lumbar
Sacral
Types of Spina Bifida
Occulta
Meningocele
Myleomeningocele
Lypo
Quick
breakdown of common issues
Difficulties
walking
EMPHASIS
on “ Each case is different!” and “complex”
Arnold Chiari Malformation
What it is
Lemons and bananas on the ultrasound
Chiari Complications
Hydrocephalus
Strong gag reflex
Balance issues
Decompression
Breathing issues
Trach
More about Hydrocephalus
Bladder
and Bowel issues
CH3: Questions during pregnancy: Sorting through the
information chaos
DON’T GOOGLE!!
What kinds of doctors will I see?
Tell me more about the “lemon sign” they keep talking about.
Will my baby’s head be shaped funny?
Why do they want an amniocentesis?
My baby’s head is measuring small! What does that mean?
My baby’s head is measuring large! What does that mean?
My baby has hydrocephalus! Is it hurting her developing
brain?
What are they looking for on all those ultrasounds they
schedule me for?
My baby has clubbed feet! How does that affect her?
They told me my baby won’t walk! Now what?
What is a “lesion level” and what does the location mean for
my baby?
They say my baby’s back has a “bubble”/has no “bubble” is
one “better” than the other?
Ch4: Questions during later pregnancy: Getting ready to meet
your baby
Is a c-section necessary to keep my baby safe?
How soon will I get to hold my baby? And how can I hold her
without hurting her?
What is NICU like?
How long is the average NICU stay?
What kinds of doctors will see my baby?
What about visitors?
When will they finally tell me exactly what my baby will and
will not be able to do?
Will my baby need anything special in his/her nursery? Is
there special equipment I should buy?
Will my baby be able to sleep on his/her back when we bring
him home?
Ch5: Treatment
Options
The MOMS
study
Surgery
Before Birth
Surgery
After Birth
What’s
happening with Hydrocephalus
VP
Shunt
ETV/CPC
ETV
Looking
to the future, the next generation of devices
After your
child arrives: Going to a clinic vs. going with separate specialists
The road to
mobility
Walking
Standers
Braces
Crutches
Rolling
Full
and part time
Ch5: Talking to Doctors: Tips for being your child’s
advocate
Use your
child’s name
Be prepared
with your list of questions
Actively
listen
Travel in
Packs- More ears to hear!
Set
the rules for who speaks to the doctor
Don’t
complicate matters
Compare
notes and check for comprehension after the visit
What to do
when you received an answer you do not understand
Prepare your child to ask questions
one day
Ch6:Medical information you should be “in the know about”
after your child is born.
Tethered
cord
The Shunt
Constipation
Catheters
Diaper Rash
Tips from the experts
Mom's and Dad's recommended remedies
Diaper Rash
Tips from the experts
Mom's and Dad's recommended remedies
Will any
future children I have be at risk for spina bifida?
MTRFR
Gene
Folic
Acid
Social Continence
Education ad IEP's
Sensory Issues
NVLD
Handedness
Sensory Issues
NVLD
Handedness
Making
friends
Interviews
with parents
Ch8: Living in the present: Tips for getting through the
tough moments
Using your
imagination for good and not evil
Keeping
your relationship strong
Cut yourself a break
Building
and using your support structure
Ch 9: Dad to Dad
Lets talk
about sex, baby!
-having
intercourse will not harm your unborn child with SB
Quotes from dads!
The desire
to take action
What’s really
“expected” of a husband/significant other
The baby is
here. Now what?
Ch 10: Tips for grandparents, friends and extended family
No sympathy
cards, please
Quotes from
a panel discussion forum
Getting
Educated and Involved
Don’t be
afraid to hold the baby!
Be real
Be there
Don’t treat
the child different from his/her siblings
Labels are
for cans of soup
Ch 11: Talking to adults with Spina Bifida
What they have to say about
childhood
What they wish their parents knew
The best thing their parents did to
help them
Spotlight section/Profile on
successful adults with careers, family, hobbies etc.
Ch12: Making the most
of your Resources
Local Spina
Bifida Associations
Knowing
your state and federal programs
SSI
State Wavers
Medicaid
Early intervention
On-line
forums
Spina
Bifida Clinic Listings
Equine
Therapy
Water
Therapy
Summer
Camps
Further SB
Educational Resources
Glossary of terms
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