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Paige Terrien Church, MD 
Neonatologist & Developmental Behavioral Pediatrician 
                       Assistant Professor, Paediatrics 
                                 University of Toronto 
Disclosures 
I
have
no
actual
or
potential
conflict
of
interest
in
relation
to
this
program.


I
also
assume
responsibility
for
ensuring
the
scientific
validity,
objectivity,
and

   completeness
of
the
content
of
my
presentation.


I
do
have
a
personal
interest
in
this
program.

Objec.ves 
   Review Neural Tube Defects (NTD’s) 


   Review medical impact of NTD’s in adolescence 
       “The most complex congenital malformation 
        compatible with life.” G. Liptak, MD 
       Review medical issues  
       Review psychosocial issues at adolescence 
       Discuss considerations with family planning 
Terminology 

                      Spinal Dysraphism




                        Occult Spinal      Spina Bifida
Spina Bifida Aperta                          Occulta
                        Dysraphism        (20% of population)
Epidemiology 
  Prevalence in Canada 
      2.6/10000 births 


  Prevalence in US 
      6‐7/10000 births 
Dr. church
Dr. church
Neurosurgical Issues 
  Hydrocephalus 
      2 peaks to malfunction (infancy and adolescence) 
      Signs of shunt malfunction may be insidious 
  Tethered cord syndrome 
      Progressive damage to spinal cord which is immobilized 
      Initial release versus repeat releases 


  Headaches common 
     Unknown (35%)* 
     Shunt blockage (25%) 
Bladder & Bowel 
  Urologic:                     Bowel 
     Tethered cord changes          DIET! 
     Bladder irritability           Medication 
     Surgical follow up 
     Increased risk for 
      bladder cancer 
Bladder & Bowel 
  Achieving continence is 
  critical to self‐esteem 

  Studies have 
  demonstrated: 
    Greater likelihood of 
     intimacy 
    Greater success in 
     workplace 
Pelvic Floor 
                  Sling of muscles 
                  Keep organs in optimal 
                  position to work  



                  At risk for early 
                  weakness  
Pelvic Floor 
  Weakening may result in shifting of pelvic 
  organs 
    May cause bladder irritability or constipation 


  Impact of hormones on bladder 
      Possible management with oral contraceptives 
Orthopedic 
Orthopedic 
  Rotator cuff critical to 
  maintain strength 

  Maintenance of strength 
  and function critical 

  Critical muscle group: 
  Hip adductors  
Medical Issues 
  Weight management critical 


  Percentage of body not as metabolically active 


  Obesity increases all complications! 

  EXERCISE 
Learning Profile 
  Individuals with SB have a different learning profile 


  Characterized by consistent inconsistency! 
      Scattered areas of strengths and weaknesses in learning, 
       intelligence, attention, and organizational abilities 


  Adult providers may not recognize weaknesses  
Psychosocial Issues 
  Independence critical to self‐esteem 


  Increased risk for depression, anxiety, and low self‐
  esteem 

  Factors involved in life satisfaction: 
      Social factors (friends, family, spouse) 
      Financial independence 
      Sex life 
Sexuality 
  Sexual Orientation 
      Danger of presumption 




  Sexual Education 
      1/4 without awareness 
       of contraception or 
       conception 
Sexuality 
  Extent of sensation and intact mechanics depends on 
  lesion 

  Minimal research on SB specifically 
     Silendafil (Viagra) can improve erectile dysfunction 
     Rings, pumps 
Sexuality   
  Reproductive Health Education 
      Hygiene 
      Sexually transmitted infections 


  Contraception considerations 
      Dexterity with hands 
      Risk of a blood clot 
      Latex free condoms (now more affordable!) 
Family Planning 
  Genetic counseling needed 

  Pregnancy is possible 

  Considerations in terms of assisted reproductive technology 

  Risks during pregnancy 
      Bladder instability, UTI 
      UTI’s may lead to preterm labor 
      Decreased mobility 
      Pressure ulcers 
Medical Checklist 
  Family doctor/provider 


  Urology  
  Neurosurgery 
  Physiatry/Physical Medicine and Rehabilitation 
      Orthopedics 
  Obstetrics/Gynecology/Urogynecology 

  Physiotherapy 
  Occupational therapy 
Conclusion 
   NTD’s with life long complications 


   Education needed  


   Avoid disenfranchising 
       Protect and maintain optimal health 
       Approach Folic Acid from prevention and minimizing of 
        morbidity  
Holland Bloorview SB/SCI Team 
   Coordinator               Social Work  
      Novlette Douglas          Gert Montgomery 

   Nursing                   Psychology 
      Elaine Mckay              Andrea Snider 

      Julia L’Abbe           Orthopedics 
      Carolyn Wilson            Jim Wright, MD 
   Occupational Therapy      Urology staff 
      Beth Morgan 
                              Transition          
   Physiotherapy                Dr. Berbrayer 
      Kim Moody 

      Kelly Brewer 
                              My gratitude to an 
   SLP 
                              amazing team! 
      Sukaina Hameer 

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