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Special Information & Support for
Families with a Prenatal and Post Natal Diagnosis of Trisomy 13
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Immediate Support |
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Just diagnosed with a Trisomy child? Are you asking yourself what to
do first? Do you want to talk with someone as soon as possible?
Please click here. |
This website has the largest collection of
Trisomy 13 – Patau Syndrome photos and family
stories in one place. You’ll find hundreds of support and information
resource links. Many of them shared by our community of families also given
this diagnosis for their precious child. This website is for those living
and who have lived with a child, diagnosed with the genetic profile of
Trisomy 13 – Patau Syndrome.
There are many sites on the Internet with
information on Chromosome 13, Patau Syndrome and Trisomy 13. Some OBGYN
Physicians, Perinatologist (medical specialist) and Genetic Doctors give the
option of Abortion, Selective/Elective Termination and early Fetal induction
(inducing labor early where the baby is unable to survive) for these
precious infants...Yes, some of the Trisomy 13 syndrome - embryos,
fetuses, infants, babies, and children do not make it full term. However,
this site will show you many DO!
Research and fully inform yourself as to whether you want Hospice and
Palliative care or the needed medical intervention for your child at their
birth. *In all the families we have heard from over the years - not a single
one has ever expressed regret over choosing to carry to term so they can
meet their child - but we have heard from many who regret missing that
opportunity! While researching Patau Syndrome you will read or have already
been told:
"NO HOPE"
"Your child will never smile"
"Not compatible with life"
"Inappropriate to treat" |
"Incompatible with life"
"Failure to thrive"
"Multiple abnormalities" |
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"Survivors have profound and severe
mental and physical disabilities, they rarely survive"
"Survivors with Patau Syndrome exhibit severe mental retardation and
physical disabilities" |
This Living with Trisomy 13 site is here to share a DIFFERENT story
- Each
family tells of the many blessings these Trisomy children bring.
We invite you to view our photo albums
with children living with Trisomy 13
and read the stories these families share about how they and their children
are growing in love. You may contact them as they are here to offer you
Support. These are some of the Trisomy 13 - Patau Syndrome Survivors.
Quick Links to Resources Below |
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Meet some of our
Trisomy 13 Families who Provide Support |
Laurie-Beth is available for immediate support CA
(California PST zone) *82-1-510-744-0512
laurie-beth@LivingWithTrisomy13.org
Registered nurse (RN) with specialties in Labor and Delivery
and Neonatal Intensive Care. Perinatal Hospice, Palliative
Care Coordinator and Certified Grief Counselor.
Melissa, mom to
Bennett-Chadlen Roy, offers her time and support to
families facing the many decisions along this trisomy
journey. From Prenatal, Living to Grief Resources.
Would you like to join some
Internet Online Message Boards? - access the YaHoo
message boards affiliated with this Living with Trisomy 13
site
To find other Trisomy Related Internet Online Support Boards
and Groups, click here
Trisomy 13 ~ A Printable Handout
A Mother's
letter to newly diagnosed families
by
Julie Sexton (Paul's
mom)
Josiah's family (phone contact
available) does not believe in "compassionate care." That is
a term coined to let your child die. We believe in taking
care of your child as though we would care for any of our
other children. Full Story off their own website-
Annie Farlow ~ Who has the
right to judge quality of life?
(website,
video, letters of support, and their trisomy journey.)
“We believe that there is insufficient emphasis placed on
the vital importance of ethics in hospitals. Society's
weakest members have no protection and there is a growing
call by physicians to obtain the right to place a unilateral
"do not resuscitate" (DNR) order on patients.“
Trisomy 13 Survivors – SOMETIMES MIRACLES HIDE
Are you questioning whether you can handle a child like
this? Are you in shock?
Elizabeth, mother of 8
children, shares her story, "Encouraging you to take the
road less taken"
Contact Elisabeth for support
- The Slotkin Family - Elisabeth was counseled to abort her
child with Trisomy 13. She chose to carry her baby full term
and tells of the blessing she received for the brief time
she had their Katie. She is available if you have been
recently diagnosed with carrying a Trisomy 13 child. You may
call or e-mail her for support.
Click here to read the letter
by Elisabeth Slotkin.
A father's perspective on having a Trisomy 13 child.
Beautiful photos of Katie narrated by her Dad, Steve Slotkin
Amaya Faith Lynch God's
plans are always perfect and we know that Amaya's life will
be used in a glorious way. We have already seen her make
such an impact on so many people...
Luke Steven Prothero We
had a whopping 8lbs 5oz boy, 3 days passed term, who
showered us with beauty and love for 58 hours and 13 mins,
if I could do it over a million times I could ask for no
more.
Devon communicates with a little
sign, gestures, PECS (Picture Exchange Communication System
ie: exchange a picture of a cookie for a cookie. Etc)…and
most recently with his newly acquired assistive
technology…his Tech Talk (compliments of
Noah’s Never Ending Rainbow).
Rebecca's family was not aware of
her trisomy 13 translocation diagnosis till she was 11 years
old. Because they weren't aware of the diagnosis, this
allowed her to have the craniofacial surgery when she was
eight-and-a-half months old. A procedure normally not
offered to children already diagnosed with Trisomy 13.
Prenatal & Perinatal Loss Resources web site,
Inspired by the life of
Gabriel,
Northern Virginia Midwifery offers support
resources for families experiencing similar losses, be they
miscarriage, stillbirth, or infant death.
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Support & Links for Prenatal Diagnosis of Trisomy 13 |
Katherine Elizabeth Foundation
exists to provide Hope, Support, and Healing to the families
that have encountered a negative or fatal prenatal diagnosis
through the term of their pregnancy, after birth, or in the
event of a pregnancy loss through a miscarriage, stillbirth,
or newborn death. Liz mom to
Katherine was inspired
to begin this support Foundation.
Trisomy Oz Prenatal Support
A website inspired by the life of
Daniel Sean Sheffield.
Dedicated to all those with trisomy 13 and similar
disorders, whether they be long-term survivors or treasured
memories. And to any parent who has ever received a
difficult prenatal diagnosis. Trisomy Oz offers global
support and is based in Australia. Trisomy Oz is neither
'pro choice' nor 'pro life'. We are pro CURRENT and ACCURATE
information. No parent should be asked to make decisions for
their unborn child without it.
Fetal Development- 1st, 2nd and 3rd Trimester images
-Your infant will develop everything from limbs to vital
organs. Week by week the changes are astounding! View to see
what's happening with your baby now!
Listen to your BABY - Fetal
Doppler Rentals

Be Not Afraid
is an online outreach to parents who have received a poor or
difficult prenatal diagnosis. The family stories, articles,
and links within this site are presented as a resource for
those who may have been asked to choose between terminating
a pregnancy or continuing on despite the diagnosis. The
families faced the same decision and chose not to terminate.
By sharing our experiences, we hope to offer encouragement
to those who may be afraid to continue on. This site also
provides -
a message board and resources
NEW
BeNotAfraid.net BLOG
In 2007, Benotafraid.net
affiliated with
Elizabeth
Ministry International,
a movement of Catholic faithful primarily serving women and their families
through the joys, trials, and sorrows of their child-bearing years. As a
specialized Elizabeth Ministry affiliate, we continue our mission of offering
encouragement, information, and life-affirming support to parents who receive
"bad news" about baby through our website outreach. We are very excited about
this affiliation and will be looking forward to developing new possibilities to
serve families.
Prenatal Partners for Life
- Providing family support, support links and encouragement
for expectant parents or new parents of a special needs
child. There are few things more frightening in life than
finding out your baby may not be healthy. We are parents
who have been through similar circumstances and we want to
offer our support. We are here to help you, you are not
alone!
String of Pearls
-
Offering Hope for the Journey String of Pearls was created
to provide a nurturing and safe place for families as they
navigate the path following a fatal prenatal diagnosis that
will result in the death of their baby prior to, or shortly
after birth.
Pre-Natal Support - Carrying to Term Resources
This site in very informative - I highly recommend reading
this page if you are recently diagnosed with a Trisomy 13 (Patau
Syndrome) child.
Twin Support Are you
having twins? One or both diagnosed with Trisomy 13 - Patau
Syndrome? Gina, a trisomy 13 diagnosed twin- survived 9
days. She was born with a proboscis and could not breath on
her own, having no nose. She also had cyclopia, She liked to
be cuddled, and holding her was a pure joy, for she was
precious to me and I know she was precious in the sight of
God. Inspired by Angle Gina,
A Mother’s Heart Ministry
Offering support, compassion, encouragement and hope. Have
you experienced the death of a young baby or child?
Infertility, An Adverse Prenatal Diagnosis? Are you Choosing
to continue your pregnancy? Post Abortion Support, healing
from the wounds of Abortion. Support Groups.
Ashley's mom
Donna is also available for Spina Bifida and Twin phone
support.
Carrying to Term When your Baby has a Serious Diagnosis -
Resources and Support
http://www.graceannenugent.netfirms.com/resources.html

http://www.t18moms.com/guests/CarrytoTerm.pdf

Carry
to Term with a Negative Prenatal Diagnosis
- Coping with Grief, Finding Help, Why Carry to Term?,
Common Fears, and message board.
Tips on creating your own memorial website
My Child, My Gift: A Positive Response to Serious Prenatal
Diagnosis
A well-researched yet easily understandable, positive guide
when you need to make sense out of what seems to be
senseless.
Baby
Center Continuing a Pregnancy with Poor Prenatal Diagnosis
- Carrying To Term Tips, Site Links and more, Carrying to
Term 101 - A "Must Have" if you are Carrying to Term
(brochure)
From
SOFT'S support site for Trisomy
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| COMMON PROBLEMS OF BABIES WITH TRISOMY 18 OR
13 |
Feeding Difficulties
Slow Post Natal Growth
Irritability and Constipation
Low Muscle Tone & Neurological Problems
Common Chronic Illnesses and Problems |
Congenital Anomalies
Usual Reported Causes of Death
Long Term Survivor
For the Professional
Recommended Medical Care |
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FREE ~New Family Package from
SOFT |
The Haberman Feeding System
-
Specialty Feeding Products for Cleft lip/Cleft Palate
Although most mothers and babies can breastfeed without
special assistance, sometimes occasional help is needed.
Premature babies, failure-to-thrive babies, and babies with
specific impairments, such as neurological challenges, may
require extra attention. Infants with severe feeding
problems can also benefit from specialized feeding products.
BMJ Helping Doctors make better decisions
The parents' journey: continuing a pregnancy after a
diagnosis of Patau's syndrome
Clinical Review Louise Locock (19 November 2005)
Keeping the baby; Parents need good support and
understanding clinicians in Trisomy 13 and other severe
disabilities.
Dr Josephine Venn-Treloar, Dr Adrian Treloar (16 December
2005)
For more Informational Articles on Trisomy
13 & Patau Syndrome
click here for
the Healthcare Professional Page
MISS Foundation ~ Silent Birth, Stillbirth and MISSing
Angels Video
SPANISH Support site for Trisomy 18 & 13 Para Padres
ENGLISH translation of Spanish support site for Trisomy
18 & 13 Para Padres (For Fathers)
United
Kingdom Support - Antenatal Results and Choices
ARC offers information and support to parents who are:
- Making decisions before, during and after the antenatal
testing process
- Told that their unborn baby has an abnormality
- Having to make difficult decisions about continuing the
pregnancy
- Having to make difficult decisions about ending the
pregnancy
Prenatal & Perinatal Loss Resources
Inspired by the life of
Gabriel,
Northern Virginia Midwifery offers support
resources for families experiencing similar losses, be they
miscarriage, stillbirth, or infant death.
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Birth Plans - Treatment for Trisomy 13 – Patau Syndrome
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Birth Plans - AGGRESSIVE TREATMENT -
MEDICAL INTERVENTION
TREATING EACH SYMPTOM AS YOU WOULD FOR A TYPICAL CHILD
(treat the symptom, not the syndrome)
What is Aggressive Treatment? ~Treating specific individual
and specific related issues one at a time.
Josiah's family (phone contact
available) does not believe in "compassionate care." That is
a term coined to let your child die. We believe in taking
care of your child as though we would care for any of our
other children. Full Story off their own website-
Trisomy 13 Survivors – SOMETIMES MIRACLES HIDE
Natalia’s family did not know
prenatally of her diagnosis. Surprised at birth faced with
the choice to allow her to die or aggressively treat - there
was no question. “We would treat her the same way we would
treat any of our other children, if in a car accident or
diagnosed with a serious illness and needed medical
intervention. She deserved the same chance at life, her
unique life.” Treating each medical symptom, not the
syndrome.
Katherine's Birth Plan
We made a firm decision to carry our baby to term and keep
her alive as long as possible, doing what is medically
necessary to treat her various conditions with the end goal
of bringing her home alive.
Birth Plan for Samuel Charles Mabeus
Our Son was diagnosed with Mosaic Trisomy 13 at approx 18
weeks gestation. As of this day, no abnormalities have been
found by our Perinatologist via ultrasound. We want our Son
treated aggressively.
-- Birth Plans- Comfort Care – PALLATIVE
CARE --
Gemma’s Birth Plan
(Gemma’s
mom
gemmatherese@yahoo.com has compiled many birth plans
available on the internet)
Kia’s Birth Plan
Are you in shock,
devastated and can't believe this is happening to you ...Not
quite sure you are ready to raise a special needs child?
Know you are not alone and be not afraid of the unknown.
With Courage and Grace you can bring your child to term and
lovingly share some precious moments. Many of these children
do survive till birth...It is then that you will need to
make more decisions. Here you can see how Lorie and Gaymond
put together a BirthPlan for the immediate care of Kia at
her birth.
Grace Anne's Birth Plan
diagnosed
prenatally with Trisomy 18 - Edwards Syndrome. Both Patau &
Edward Syndrome share the same "incompatible with life"
diagnosis. Grace Anne was born by elective C-section and
lived for 62 days. We got much more than we ever dreamed.

Trisomy 13 Planning Pages – Making a Birth Plan – Preparing
for a Plan of Care Conference
Cornerstone Communities of Emmanuels Foundation
(EF) offer support, friendships and guidance to families in
a pregnancy or with an infant having a rare or difficult
medical diagnosis; EF helps families to tap into community
resources to meet emotional, spiritual and medical needs in
a timely manner. Building stronger communities, striving
together to support families through critical issues,
companion parents in their emotional journey and encourage
parents to be their child's best advocate. Cornerstone
Communities are more than just EF volunteers helping
families; it is network of independent organizations that
offer their time and talent to support families in various
situations. EF facilitates Affiliates, Sponsors and also
external links to world wide community resources while
providing a centralized forum for communication. PDF
Brochure ; PDF
About Us Package
FAQ Frequently Asked Questions Finding Support Resources for
your Special Needs Child
Federal & State Programs, Early Intervention,
Financial Assistance Programs and more resources for
disability related issues.
All Things NICU
HELPFUL NICU INFORMATION, LINKS, AND EVEN STUDY GUIDES! |
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Complimentary Nationwide Services & Special moments captured in PHOTOGRAPHY
& VIDEOGRAPHY |
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CaringBridge Free, personalized websites that support
and connect loved ones during critical illness, treatment and
recovery. A wonderful way to keep your relatives and friends
updated of the day to day experience of Living with a Trisomy 13
diagnosed genetic profile, sharing your journey. We can link to
your CaringBridge website off your child’s LWT13 album page.
A
Butterfly’s Touch - The mission of A Butterfly’s Touch is to
share the compassion of Jesus Christ by providing support to
parents experiencing infant-loss during their time of need. We
accomplish this by providing memory boxes and remembrances for
the parents; providing information and support through our free
lending library and; helping to lessen financial burdens through
a fund to help with funeral and burial expenses.Not Compatible with Life, a diary of keeping Daniel, By
Kylie Sheffield - Kylie (mom to
Daniel) would love to share her book with you. Please email
her for more information.
shefs@aapt.net.au
 Prenatal
Partners for Life ~ Gifts of Love - Lambs of Life and Luke’s
Blankets of Love - These gifts are available FREE of charge,
especially for expectant parents who have received an adverse
diagnosis.
FREE
Gemma's Bears
are intended to be a gift of love for babies and families who have been
given the difficult diagnosis of Trisomy 13 or 18, both of which are
considered by most doctors to be fatal, although some babies can and do
survive. It is our hope that through these gifts of love, the parents of
these special children will remember that their child, is indeed a precious
"Child of God". To receive your gift of love inspired by Gemma
click here .
The American Child Charity
Photographers 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. They include nearly 300 photographers
and collectively provide families in need with thousands of fine art
portraits, capturing and preserving tender moments of their young lives.
Katherine Elizabeth Foundation Providing hope,
support, and healing to the families. We'd love to send you a Bunny.
The
mission of
A Butterfly’s Touch
is to share the compassion of Jesus Christ by providing support to
parents experiencing infant-loss during their time of need. We accomplish
this by providing memory boxes and remembrances for the parents; providing
information and support through our free lending library and; helping to
lessen financial burdens through a fund to help with funeral and burial
expenses.
Payton's
Birthday Bears
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A gift of love to honor and celebrate children affected by Trisomy 13 and 18
on their birthday.
Footprints
Photography
- Provides desperately ill infants and children in their areas with terminal
illnesses with complimentary portrait sessions.
Now I Lay Me Down
to Sleep - Infant Bereavement Photography
- A nationwide 501 (c)(3) non profit organization. No fees for the
Photography services. The soft, gentle heirloom photographs of these
beautiful babies are an important part of the healing process. They allow
families to honor and cherish their babies, and share the spirits of their
lives. (See the beautiful photos they did for our treasured memory
Gabriel Olson)
Soulumination
- celebrates the lives of children facing life threatening illnesses by
providing professional photographs—free of charge—of these children and
their families. Puget Sound area, Canada, New Jersey, and Oklahoma.
We are a small non-profit organization located in Seattle, Washington.

Keepsake Bracelets ~ (FREE) Complementary to those who
have experienced Pregnancy or Infant Loss. Bracelet was
"inspired by
Angel Austin and Katie Reed"
Trisomy 18 Bridge of Hope Hope, Help, and
Information to help you advocate for your child
Get Your Free Action Kit (Please specify that your child
has Trisomy 13 so that you don't get the Trisomy 18 book.)
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Adoption, Finding Doctors and Other Services |
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Click here for a
referral list of Doctor's/Physician's & Midwives that have
worked with our Trisomy Children.
Adoption
and Home Schooling Special Kids
(NATional Challenged Homeschoolers Associated Network). They
have an "arm" called CHASK (CHRISTIAN HOMES AND SPECIAL
KIDS) which matches people who have, or are expecting,
special needs children they feel unable to care for with
Christian families eager to adopt them. Continuing Adoption
support newsletter.
CHASK - Christian Homes And
Special Kids
Adoption Resources - They match parents wanting to care
for/adopt special needs babies/children (even if the
baby/child has a poor prognosis) with parents/expectant
parents needing a home for their child. call: Birth
Parent's Line 1-800-266-9837 Contact CHASK 208-267-6246
Adopt America Network
- Connecting families with medically fragile children. For
more information please call toll free: 1-800-246-1731
Meet two of our Trisomy 13 children who have been lovingly
adopted.
Mollie Faith Havlik and
Joey Lane Huddleston Reite |
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Crisis
Pregnancy Support -
Support for Single and Unwed
mothers |
Presbyterians Pro-Life Research,
Education and Care, Inc.
...committed
to restoring the Church's witness and ministry in response
to questions about life.Other Pro-life sites
Helpful Resources for parents
who have received a serious prenatal diagnosis.
LIFECALL Resources for Pregnant Women and Their
Babies - NATIONAL CONTACTS Directory of Shelters for
Pregnant Women - Through God's Grace, we save babies lives
and shelter their young mothers while providing education
and ongoing compassionate support services. We further
educate young people to make healthy life choices. We also
shelter women who are homeless, sick and elderly and we help
them to restore their dignity. |
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Surgical Procedures and Aggressive Medical Treatment Support
for those opting for medical intervention for specific
abnormalities.
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Cardiac
Surgery for Trisomy kids – Hospital List A Barnes,
J.C. Carey, Care of the Infant and Child with Trisomy 18 or
Trisomy 13, 2008 (3rd Edition) on page 67, SOFT Surgery
Registry lists hospitals were cardiac surgery was done. You
can obtain a copy of this edition of the Care book through
Barb. email
barbsoft@rochester.com or 1-800-716-SOFT I believe the
book will benefit most families and their docs too. Barb is
the President of
SOFT
Support Organization for Trisomy 18, 13 and Related Disorders
Intensive cardiac management in patients with trisomy 13 or
trisomy 18
Am J Med Genet Part A. -*Intensive cardiac management
consisting of pharmacological intervention for ductal
patency and cardiac surgery was demonstrated to improve
survival in patients with trisomy 13 or trisomy 18 in this
series. Therefore, we suggest that this approach is a
treatment option for cardiac lesions associated with these
trisomies. These data are helpful for clinicians and
families to consider in the optimal treatment of patients
with these trisomies.
Hypoplastic Left Heart Syndrome: "To Treat or Not to Treat"
ARTICLE - CONCLUSION: These results indicate that HLHS can
no longer be regarded as a uniformly fatal congenital
anomaly. However, due to uncertainty about long-term
outcome, discussion with parents should be open, and
compassionate care should be presented as a management
option until long-term data are available.
Holoprosencephaly (HPE) Support
- “If the parent understands what they’re getting into, the
risks, and the range of potential problems, I will help
them, no matter what. If they want to be aggressive, I will
support them, or if they just want palliative care, that is
okay as well. Most of the families that see me come because
they want treatment. They want to do the most that they can,
whatever that most is. I try to help those that choose to go
ahead with the pregnancy or those who did not have a
prenatal diagnosis.” Dr. Eric Levey, Kennedy Krieger
Institute
What is an Omphalocele?
The method of delivery will be discussed with you as the
time gets closer. The method of delivery is dependent on the
size of the omphalocele. If the size is quite large and
especially if the liver is involved, the doctor may prefer
to do a cesarean section (c-section) to avoid the risk of
injury to the liver. Otherwise, the preferred method of
delivery is vaginal."
Decompressive cranioplasty
may improve the clinical symptoms of children with mild
trigonocephaly and intracranial pressure: report of 56
patients - June 5 2004
Mild trigonocephaly with clinical symptoms:
analysis of surgical results in 65 patients - June 5 2004
Congenital Heart Information Network - CHIN
-
To find the particular heart defect that you want
information about (as well as stories about the child and
specific treatment chosen) then select 'search' on the left
column and type in a few words to describe and it will bring
up stories, pictures and information pages to choose from.
Vagus Nerve Stimulation (VNS) Therapy
– a procedure used to help control seizures that are not
controlled by medicine. VNS is a non-drug treatment option
for seizure and epilepsy.
Children on this web site who have the VNS
Prenatal Partners for Life
- Congenital Diaphragmatic Hernia (CDH)
Stories - Survivor Stories and resource links to CDH Support
Real Hope for CDH
- Learn about The 92% Survival Rate for CDH Babies Born at Shands
The Parker
Reese Foundation -
New Hope for Congenital Diaphragmatic Hernia. Support for Families, Featured
Kids, Gift of Hope, Gift of Comfort, Parker's House, Yahoo Support Group
A non-profit organization.
Melissa Roy, mom to Bennett-Chadlen, has
an extensive list of Congenital Diaphragmatic Hernia Resources on her ~*MY
BABY IS AN ANGEL*~ blogspot.
SLEEPMED Science. Systems.
Solutions.
Sleep and EEG diagnostic services and a major provider of therapy devices to
sleep patients all over the United State
Additionally, we operate over 20 DigiTrace Ambulatory EEG service centers
and partner with dozens of comprehensive epilepsy centers across the nation
to provide in-home EEG testing for those patients who have experienced
seizures, spells or unexplained neurologic episodes.
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Pregnancy - Selective & Early Induction - Elective
Termination - Abortion - Fetal Reduction - Selective
Fetocide - Therapeutic Abortion - Termination for medical
reasons - Elective Tx
- Interrupt Pregnanc - Prostaglandin Stillbirth - "Saying
Goodbye Early" |

Post Abortion Help Poor Pre-Natal
- A Ray of Hope for Those Suffering Abortion's Aftermath - An invitation
to healing from someone who has suffered the loss of a child from abortion
due to a poor prenatal diagnosis ~
About Lumina
TERMINATION/ABORTION
IMMEDIATE PHONE SUPPORT -
Rachels Vineyard
Theresa Burke, PhD, Founder, Executive Director has a toll-free number
for IMMEDIATE SUPPORT ( 877 HOPE 4 ME ) and has someone answering the phone
at all times. Calling them may be a great source of support and comfort for
you. They are available NOW
RETREAT information
Their Healing Retreats are Nationwide and they have a minimal fee, and
scholarships $$ for those needing financial assistance.
Feeling pressure to induce early? Selective induction, termination,
abortion.
REAL, CONFIDENTIAL, FREE, NON-JUDGMENTAL HELP TO AVOID ABORTION, FROM MANY
PLACES:
3,400 confidential and totally free groups to call and go to in the U.S...1,400
outside the U.S. 98 of these in Canada. Free, financial help given to women
and families in need. More help given to women, families.
Helping with mortgage payments and more. More help. The $1,950 need has been
met! CPCs help women with groceries, clothing, cribs, "safe haven" places.
Help for those whose babies have Down Syndrome, Other Birth Defects. $$ Help
Adopting the Babies.
Rachel’s Vineyard - Healing the trauma of Abortion and Termination for
medical Reasons This is a wonderful support site and program for those who
have had an abortion, and for those who felt pressured to terminate for
medical reasons. Support for men
*Youtube Video - Healing from the pain of abortion for men.
Kevin Burke Discusses his book "Redeeming
a Father's Heart".
Redeeming A Father’s Heart presents the powerful stories of 10 courageous
men with the common desire to present the truth of their abortion experience
and the consequences of this life changing decision. These stories are
exciting and moving testimonies that journey deep into the heart of male
post abortion pain…ultimately revealing the miraculous power of God’s saving
power.
LIFE ON THE LINE -
Many of our Trisomy families are encouraged to terminate these babies. Rev.
Pavone has posted three videos on You Tube in which he demonstrates the most
common abortion procedures, using the actual abortion instruments and fetal
models. In one video you see the actual babies being examined by a doctor.
We ask you to view and to spread far and wide these challenging videos. The
links are as follows: YouTube videos
Dismemberment D&E Procedure
Suction
Abortion Procedure
Prostaglandin Abortion Procedure

A
Different Kind of Crisis Pregnancy: When There is “Bad News” About
Baby
Article
By Monica Rafie, founder and administrator of
BeNotAfraid.Net
Rachel’s
Vineyard - Healing the trauma of Abortion and Termination for medical
Reasons
This is a wonderful support site and program for those who have had an
abortion, and for those who felt pressured to terminate for medical reasons.
Support for men

Symptoms of Post-Abortion Trauma
Helpful Resources
Forbidden
Grief
The Unspoken Pain of Abortion - It's time to move beyond the politics of
abortion.
For more than 30 years, our nation has argued about abortion. In that time,
over 30 million women have had one or more abortions.
While the political battle rages, little has been done to address the
emotional needs of those who struggle with feelings of grief, shame, guilt,
feeling judged by others. Instead, social taboos stifle discussion of
abortion-related feelings. Women are left feeling isolated, and their
recovery is inhibited.
Forbidden Grief provides the reader with the most up-to-date research on
abortion, and tells the inside story of the fight within the psychiatric
community to recognize post-abortion trauma.
Forbidden Grief is a compelling, haunting review of Dr. Theresa Burke's
experience in counseling hundreds of women for abortion-related emotional
problems. Dr. Burke exposes the obstacles in the way of post-abortion
healing, reviews the full range and depth of post-abortion adjustment
problems, and illustrates how we can create a more understanding and healing
society where women will no longer be required to hide their pain.
Prenatal Partners Second Thoughts Resources, Second Thoughts Stories

Silent No More
-
Do you regret your abortion? Do you regret your termination? What are the
Goals of the Silent No More Awareness Campaign?
Educate the public that abortion is harmful emotionally, physically and
spiritually with lasting consequences.
Abortion-Breast Cancer Link (You Tube videos)
Partial Birth Abortion (You Tube videos)
Abortion Breast Cancer
- Women were never told about their findings. As of 2006,
eight medical organizations recognize that abortion raises a
woman's risk for breast cancer, independently of the risk of
delaying the birth of a first child (a secondary effect that
all experts already acknowledge). An additional medical
organization, the Association of American Physicians and
Surgeons, issued a statement in 2003 calling on doctors to
inform patients about a "highly plausible" relationship
between abortion and breast cancer. General counsel for that
medical group wrote an article for its journal warning
doctors that three women (two Americans, one Australian)
successfully sued their abortion providers for neglecting to
disclose the risks of breast cancer and emotional harm,
although none of the women had developed the disease.
RealChoice (BLOG) The side of “choice” the American
abortion lobby doesn’t want you to see.
Concepts of Truth
- Hurting from Abortion? 24/7
Confidential Help – Phone support
National Helpline for Abortion Recovery - Men and Women
support
After abortion
Life after abortion : News, opinion, personal
experience, resources.
Real Choice - Trisomy 13, 18, & Related Disorders -
Links to information and support for parents whose child has
been diagnosed with Trisomy abnormality
Fr.
Frank Pavone
has
posted two videos on You Tube in which he demonstrates the
most common abortion procedures, using the actual abortion
instruments and fetal models. We ask you to view and to
spread far and wide these challenging videos. The links are
as follows:
Dismemberment D&E Procedure
-
Suction Abortion Procedure

Looking Termination/Abortion/Early Induction in the eye
–
A Priests for Life Website
Images of Fetal Development - GRAPHIC IMAGES OF ABORTION,
Pictures of Aborted Babies, & Videos of Abortion
Exclusive: Twenty Years of Eugenic Abortion at Ontario
Catholic Hospital
Special Report presents hospital policy document approving
the procedure By John-Henry Westen |
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Genetics - Medical |
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Congenital Heart Information
Network
C.H.I.N. is an international organization that provides
reliable. information, support services and resources to families of
children with congenital heart defects and acquired heart disease, adults
with congenital heart defects, and the professionals who work with them.
Clinical Genetics - Patau Syndrome
National Electronic Library for Health
Pitfalls to Avoid
* Confirm diagnosis cytogenetically, do not rely on clinical diagnosis
* Recurrence risk is significantly increased if there is a translocation
which exists in one of the parent, therefore always check the parents
chromosomes if the child has a translocation form of trisomy 13
* Do not rely on rapid FISH results to exclude the diagnosis, always wait
for the full culture
* Never tell parents the child will not survive, 3% of children will
survive to six months and a small number are still alive at one year, this
may have a significant impact on their decisions about the pregnancy
* The absence of congenital heart disease does not necessarily
improve the prognosis, it is thought that many die due to central apnoea
* If possible surgery should be avoided until the karyotype is known as
this may influence decisions about management.
Clinical Genetic article (Full text -click here)

Rare /
Orphan Diseases
Patau Syndrome (Trisomy 13)
Extra copy of Chromosome 13
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Trisomy 13 and Ethics – Bioethics – Human Rights |
INSTITUTE FOR THE STUDY OF DISABILITY & BIOTHICS
-
Regent University School of Education
A multinational response to medical and cultural trends impacting people
with disabilities.
Breaking News ,
Newsletters ,
Disability & Human Rights
&
Important Aspects |
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Wrong Diagnosis - Misdiagnosed |
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Families who were given a trisomy 13 genetic profile through
testing and/or genetic markers, and later to find out it was a misdiagnosis.
Living Album pages - Alicia Gartner,
Treasured Memory Album pages – Zahra
Abdallah |
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Don't Miss..... |
4 Things you'd like to tell your Neotalogist and Professionals caring for your
Patau Syndrome Child
By Jill, mom to Alegria |
National Institutes of Health Office of Rare Diseases Research
Genetic and Rare Diseases Information Center (GARD)
Treatment suggestions: Treatment of children with trisomy 13 is planned
on a case-by-case basis. The type of treatment given depends on the
patient's individual condition. |
SUGGESTED GUIDELINES
*Health Supervision and Anticipatory Guidance for Infants and Children
with Trisomy 18 and 13: from SOFT -
A
Global Support Network for Trisomy
By
Dr. John Carey,
Medical Advisor to SOFT |
Baby Jules Congenital Disorders Policy
SUMMARY & PURPOSE:
The purpose of this policy is to facilitate a plan of care prior to the
birth of infants
with complex congenital disorders. |
WHAT TESTS SHOULD BE DONE
ONCE MY CHILD IS DIAGNOSED
WITH TRISOMY 13?
By Christine Nelson MD, Pediatric Hospitalist |
*Be Aware* Preeclampsia can develop with Patau Syndrome
LWT13 families who experienced
Preeclampsia
*RESEARCH* Know the
Preeclampsia
Signs and Symptoms
Preeclampsia Foundation |
Meet and talk to families who’ve experienced having a child with Trisomy 13 ~
Patau Syndrome.
LWT13 message boards. |
Prenatal Diagnosis Information
Package -
Compiled by Kylie Sheffield (mum of Daniel, full
Trisomy 13) in consultation with families on this web site |
Noah's Never Ending Rainbow
BE sure to contact Noah’s Never Ending Rainbow for their
FREE New-Family
packets.
(Includes a 1 year SOFT membership along with many other
amazing Trisomy Awareness Resources & goodies) |
Creating Priceless Memories and Keepsakes with your Baby
By Becca Bouligny |
Letters to Darcy by
Tracy Ramos
READ an EXCERPT of this BOOK |
Hope for Trisomy 13 and 18
What is Informed Consent? This video explains the ethics and requirements
for informed consent for treatment that every parent should fully understand
prior to accepting treatment or declining treatment. Management of Neonates
with Trisomy Syndromes |
FREE Gemma's Bears a small gift of love for
families whose babies are newly diagnosed either prenatally or after birth with
trisomy 13 & 18. |
FREE ~New Family
Package from SOFT |
FREE
Complimenary Gifts helping you to create precious moments
- infant bereavement photography, memory bracelets, blankets, bears etc.
HEALING THE
HEARTBREAK THE POWER OF BABY PHOTOS 
Now I Lay Me Down to Sleep - NBC's Today Show - 2008-03-05 |
Feeling pressure to
induce early? Selective induction, termination, abortion. REAL,
CONFIDENTIAL, FREE, NON-JUDGMENTAL HELP TO AVOID ABORTION, FROM MANY PLACES:
3,400 confidential and totally free groups to call and go to in the U.S...1,400
outside the U.S. 98 of these in Canada. Free, financial help given to women and
families in need. More help given to women, families. Helping with mortgage
payments, groceries, clothing, cribs, "safe haven" places. Help for those whose
babies have Down Syndrome, Other Birth Defects. $$ Help Adopting the Babies. |

Not Compatible with Life, a diary of keeping Daniel
By Kylie Sheffield
Kylie (mom to Daniel) would love to share her book with you.
Please email her for more information.
shefs@aapt.net.au |
|
Click here for Doctor, Physician & Midwife
referrals |
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Perinatal hospice / palliative care programs and services |
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Many of our albums have informative and moving
Videos & Presentations |

Tangible Memories
msnbc video for babies who are likely not to survive birth - The Power of Baby
Photos |
Lethal Language Lethal Decisions
By Tracy K. Koogler, Benjamin S. Wilfond, and Lainie Friedman Ross
“Although many of the congenital syndromes that used to be lethal no longer are,
they are still routinely referred to as “lethal anomalies.” But the label is not
only inaccurate, it is also dangerous: by portraying as a medical determination
what is in fact a judgment about the child’s quality of life, it wrests from the
parents a decision that only the parents can make.” ©
The
Hastings Center. Reprinted with permission. This
article originally appeared in the Hastings Center Report, vol. 33, no. 2
(2003),” Editorial email:
editorial@thehastingscenter.org. |
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Why would a good God allow these type of things to happen?
Click here to listen to Larry's message about his son.
(In Audio) Larry Preaches on God's Sovereignty in light of His son's death
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SHORT QUOTES from our Albums |
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"Mitchell is really just a typical boy who
likes to play and have fun just like any other child. I want medical
professionals and healthcare providers to look at his video and learn that
his life is worth saving. Our doctors have been incredible. They are so
supportive and have always been cautiously optimistic about Mitchell, it
makes a world of difference." |
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~Katie – Mom to Mitchell |
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"I'm almost past sad, I'm so very happy that
God picked us to treasure this gift. And although I have gone through all
those periods of grief, I would pick having her for that brief period in
time to not having her at all! When I look at the slideshow, I see so much
love and it reminds me so much of those precious 17 hours and is very
rewarding... she is so much a part of me and I can't help but share her
precious little soul!" |
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-Lorie
- Mom to Angel Kia |
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"Sadly...Many
of the medical and professional community are woefully uninformed about
Trisomy 13. Outdated statistics and misinformation cause so much
hopelessness...and also cause many to withhold life giving treatment to a
child who deserves the same chance any typical kid would receive." |
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- Penny,
Devon's mom |
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"My daughter had Trisomy 13...a disorder they said was not compatible with life. I was then asked to decide if I wanted to continue my pregnancy or terminate it. I was not willing to give up on my daughter, a decision the perinatologist made clear they thought was the wrong one...If Caileigh was to die it wasn't going to be because of me....Caileigh is the greatest gift I have ever been granted in life and I carry her with me everywhere I go and in everything I do." |
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-Jackie, mom to Caileigh |
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"The joy far outweighs the struggles. I don't
know of anyone that wishes they had aborted their baby, but I have talked to
several who wish they had not." |
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-Anne
Jackson |
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"God's gifts are never what we expect. The
trick is not to be confused by the wrapping paper, but to be sure to open
the box." |
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- Paul - Dad to Angel Kelli
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"I hope that the increasing images of living children with Trisomy 13 will
wipe out the words 'incompatible with life.'" |
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- Jenn - Mom to Angel Kalysta |
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"To any of you, that may come across a
parent about to raise a Trisomy 13, let them; encourage them, give them hope
and peace that they will be blessed with the endurance to handle such a
special child. And could quite possibly be their "favorite" for every
reason." |
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-Barry & Deidri Alderson |
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"If you are reading this and your heart is breaking with the news that your child has Trisomy 13, please never give up on your child you never know what God will do, and you don't know how strong your little one will be... So if you are reading this and you have no hope please find hope and comfort in knowing, God is bigger than anything, and He's got things under control.” |
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~ Danielle - Mom to
Ivey |
"Thank you
very much for your site. As a Labor and Delivery
Nurse, I have been frequenting it often for
information.
I wish people had access to your site prior to make
the decision to terminate. Blood tests are accurate,
however, Ultrasounds only show so much, and you'd be
amazed how often they are wrong.
As a L&D Nurse I thank all the families who carry
their babies to term. You'd be amazed how every
delivery touches the life of your nurse."
Anonymous
3-12-07
More> |
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