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Resources for parents who carry their baby to term despite a poor prenatal diagnosis

 

- Stories

- Films and Slideshows

- Songs

- Interviews / Shows

 

Stories

Amniotic band syndrome

   * different stories

 

Cephalic Disorders

Anencephaly
   * many stories on the anencephaly information site
   * Alexa
   * Anastasia
   * Annalise
   * Ariel Elisabeth
   * Austin
   * Ava Grace
   * Benedict Oliver
   * Boston Michael
   * Brandon Bobola
   * Caleb
   * Charlotte Mary
   * Colby
   * Cyril
   * Daniel Ray
   * Eden Rebekah
   * Emily Rose
   * Faith Lynn
   * Gabriel
   * Gabriel Aaron
   * Gabriel James
   * Gracie Jo
   * Jasmine Faith
   * Jenna
   * Jessica Marie
   * Jessica Jade
   * John Raphael
   * Logan Quinn
   * Malachi Samuel
   * Mary Elisabeth
   * Mary Magdalene
   * Matthew
   * Michaela Hope
   * Nathan
   * Rosie
   * Tabitha
   * Talitha Hope
   * Timothy Paul
   * Weston
   * William Jasper

   Twins:
   * Lee and Leah
   * Sunshine and Katelyn

Encephalocele
   * Haley Faith
   * Faith Aminah
   * Joshua blog about his story
   * Sami

Holoprosencephaly (HPE)
   * Larson
   * Pearl

Hydranencephaly
   * Rays of Sunshine, Hydranencephaly Information

Microcephaly
   * Benjamin's story

 

Chromosome Disorders

Trisomy 5p
   * Elisabeth et Mary Ann

Chromosome 12q deletion (q15q21.2)
   * Noah

Trisomy 13 / Patau's Syndrome
   * Gemma
   * Natalia
   * Noah Alexander
   * Olivia Hope

Trisomie 18 / Edward's Syndrome
   * Aaron Jae
   * Abigail Renee
   * Abigail Wilsford
   * Aliva
   * Annabel Grace an amazing 3 year old girl
   * Colm
   * Daniel
   * Eli Bradley
   * Elizabeth
   * Gavin Cade McMath
   * Gareth
   * Gerard
   * Hope Elizabeth
   * Jacob Ryan
   * Jeanette Isabella
   * Johnny
   * Jordan William
   * Kayden
   * Kammie
   * Maddox
   * Marie
   * Micah
   * Naveah Faith
   * Peter
   * Rachel and Regan
   * Simon Andrew King
   * Sophia

 

Congenital Diaphragmatic Hernia (CDH)

   * Allison
   * Avery
   * Brandon
   * Cayden Eugene
   * Cecilia
   * Claire
   * Connor
   * Dakota Mae
   * David
   * Graham
   * Jackson
   * Joel
   * Judah
   * Leah Claire
   * Madison
   * Mert
   * Nanette Jo
   * Patrick
   * Raymond Drew
   * Robert Joseph Bryce
   * Sarah Christina
   * Silas Charles
   * Sofia

 

Disorders of the cardiovascular system

Ebstein's Anomaly
   * Jacob
Hypoplastic Left Heart Syndrom (HLHS)
   * Austin
   * Braedon
   * Seamus

 

Hydrops foetalis

   * Georgia

 

Kidney and urinary tract disorders

Autosomal Recessive Polycystic Kidney Disease (ARPKD)
   * Bennett
   * Remi Elaine

Bilateral Renal Agenesis / Potter Syndrom
   * Belecia
   * Caitlyn
   * Gabriela Lael
   * Hunter
   * Jonathan
   * Joshua
   * Michael
   * Miriam
   * Talina
   * Tommy

Polycystic Kidneys
   * Audrey Caroline
   * Eli

Posterior urethral valves (PUV)
   * Samuel

Lower urinary tract obstruction (LUTO)
   * Vayden James

 

Skeletal disorders

Achondroplasia
   * Owen

Thanataphoric Skeletal Dysplasia
   * Gabriel Jonathan
   * Jamie Lynn
   * Leah

 

Spina bifida

   * Andrew
   * Isaac Russel

 

Twin to twin transfusion syndrome (TTTS)

   * Lucas and Matthew
   * Emma and Macey

 

VACTERL / VATER Association

   * Jenna

 

Films and slideshows

   * "99 Balloons" Trisomy 18
   * Audrey Caroline Polycystic Kidneys
   * The Life of River Creedance, a claymation / movie anencephaly
   * Joshua encephalocele
   * Austin John anencephaly
   * Chase anencephaly
   * Dharma Lucille anencephaly
   * Gabriel James anencephaly
   * Isabel Eve anencephaly
   * Olivia Faith anencephaly
   * Zion-Grace Elizabeth anencephaly
   * Benjamin Elijah Andrew trisomy 18
   * Copeland Farley trisomy 18
   * Jacob Ryan trisomy 18
   * Lilly trisomy 18
   * Maddox Donald trisomy 18
   * Sully trisomy 18

 

Songs

   * I will carry you by Selah
   * Down The Road Of Bittersweet by Karl Kohlhase

 

Interviews / Shows

   * The Smith Family Story
   * Eight Days the story of Copeland, who had trisomy 18
   * Radio interview of Austin's parents (anencephaly). The interview actually starts about 11 minutes into the recording.

 

Submit a link.

 

Last update: December 13, 2016