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Trisomy
18 (Edwards Syndrome) Resources
- Message
Boards
Trisoomy
18 Support
Trisomy
18 Support (archives)
Trisomy
Online Support (all varieties) - Sign
up
A
Place to Remember
Baby
Center - High Risk Pregnancies
- Websites
What does Claire have?
Trisomy 18/Edwards Syndrome/Chromosonal Abnormalities/Genetic
Disorders
Babies
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.
Trisomy
18 Support - Genetics
Trisomy
18 Support - Common Problems
Support
Organization for Trisomy (SOFT) - Trisomy 18 facts.htm
Lucile
Packard Children's Hospital - Medical Genetics
Development
Disabilities Digest - Trisomy 18 (Edwards Syndrome)
Parent's
Place - Prenatal Testing
Witness
to Love The short, beautiful life of Grace Anne Nugent
Mari
Rae - Child with Trisomy 18 (surviving)
Trisomy
Online - Families
March
of Dimes - Chromosomal Abnormalities
National
Organization for Rare Diseases - Trisomy 18 Syndrome
National
Library of Medicine - National Institute of Health - Trisomy 18
T18moms
Chromosome18
Registry & Research Society
Trisomy
18 Growth Charts
Unique Rare
Chromosome Disorder Support Group
Noah's
Never Ending Rainbow - A National Trisomy Organization
TRIS
- Tracking
Rare Incidence Syndrome
CPC's - Claire's first 'flag' found to lead us to her prognosis.
Choroid
Plexus Cyst
WebMD
- Should I Be Worried About a Cyst in My Baby's Brain?
Difficult Pregnancies/Grief:
Be
Not Afraid - online outreach to parents who have received
a poor or difficult prenatal diagnosis.
Compassionate
Friends
Morning
Light Ministries
Waiting
with Love
Experiencing
the Death of a Sibling as a Child -
Graceannenugent
- Trisomy 18 resources
Carrying
to Term
Griefnet.org
- Grief
- Inspiration
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
Specialty
Bottles - SpecialNeeds Feeder was called Haberman(TM) Feeder - Inventor
Mandy Haberman
Claire's Swing
(featuring Red Dog)
Claire's Boppy
Pillow
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.
- Increasing
Calories
** Always seek medical advice before
changing or adding to your child's nutrition
Expected
Total Daily Intake - Gaining
and Growing Information for Preterm (low birthweight) Infants
Making
a high calorie formula** 1
2
3
4
Super
Soluble DuoCal** Order and recipes
Brain
Vibrance Supreme Powder **
Olive or Vegetable Oil
Mayonnaise
http://specialchild.com/index.html
- Special Child - For Parents and Caregivers of Children with
Special Needs
Pipsqueakers
shoes - Unique
squeaky footwear will delight your precious toddler
- Traveling
and Errands
Shop
N' Dine Shopping Cart Safety Seat
Floppy
Seat ™ - Deluxe Shopping Cart Seat Cover
Single
or Double Seat-3 in 1 Shopping Cart Seat Cover, High Chair Cover
and Tote Bag.
Shopping
Cart Seat Cover, High Chair Cover & Swing Cover
Claire's SlingEZee
Bumbo
Baby Seat
- Making
Memories
Trsomy
18 Bracelets (link expired)
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