Table of Contents

Below see a list of Chapters yet to come.....








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 

            Will any future children I have be at risk for spina bifida?

                        MTRFR Gene

                        Folic Acid      

                       

 
Ch7: Questions about social development

            Social Continence

            Education ad IEP's
                  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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