18 (Edwards Syndrome) Resources
18 Support (archives)
Online Support (all varieties) - Sign
Place to Remember
Center - High Risk Pregnancies
What does Claire have?
Trisomy 18/Edwards Syndrome/Chromosonal Abnormalities/Genetic
can be born with extra copies of chromosomes 13 or 18. These trisomies
are usually much more severe than Down syndrome (extra copies
of chromosome 21), but fortunately less
common, each affecting about 1 in 5000 babies.
Babies with trisomies 13 or 18 generally have severe mental retardation
and many physical birth defects. Sadly, most affected babies die
before their first birthday.
18 Support - Genetics
18 Support - Common Problems
Organization for Trisomy (SOFT) - Trisomy 18 facts.htm
Packard Children's Hospital - Medical Genetics
Disabilities Digest - Trisomy 18 (Edwards Syndrome)
Place - Prenatal Testing
to Love The short, beautiful life of Grace Anne Nugent
Rae - Child with Trisomy 18 (surviving)
Online - Families
of Dimes - Chromosomal Abnormalities
Organization for Rare Diseases - Trisomy 18 Syndrome
Library of Medicine - National Institute of Health - Trisomy 18
Registry & Research Society
18 Growth Charts
Chromosome Disorder Support Group
Never Ending Rainbow - A National Trisomy Organization
Rare Incidence Syndrome
CPC's - Claire's first 'flag' found to lead us to her prognosis.
- Should I Be Worried About a Cyst in My Baby's Brain?
Not Afraid - online outreach to parents who have received
a poor or difficult prenatal diagnosis.
the Death of a Sibling as a Child -
- Trisomy 18 resources
Trip to Holland and more.
Baptism by Desire - When expecting Claire, worrying that she wouldn't live long enough to be Baptized... this helped ease our mind.
- Of Interest
Bottles - SpecialNeeds Feeder was called Haberman(TM) Feeder - Inventor
(featuring Red Dog)
The American Child
Photographers Charity Guild - A non-profit, volunteer based
organization of child photographers from all over the country
who have come together to form a guild dedicated to children in
need and their families.
- Advocating for Your Child
IEP meetings -
Sorry, we don't have the money. ", etc.
** Always seek medical advice before
changing or adding to your child's nutrition
Total Daily Intake - Gaining
and Growing Information for Preterm (low birthweight) Infants
a high calorie formula** 1
Soluble DuoCal** Order and recipes
Vibrance Supreme Powder **
Olive or Vegetable Oil
- Special Child - For Parents and Caregivers of Children with
shoes - Unique
squeaky footwear will delight your precious toddler
N' Dine Shopping Cart Safety Seat
Seat ™ - Deluxe Shopping Cart Seat Cover
or Double Seat-3 in 1 Shopping Cart Seat Cover, High Chair Cover
and Tote Bag.
Cart Seat Cover, High Chair Cover & Swing Cover
18 Bracelets (link expired)