About Trisomy 13
What is Patau's Syndrome?
Trisomies and Genetics
Summary of Info on Trisomy 13
Negative Prenatal Diagnosis
You are Not Alone!
Perinatal and Neonatal Support for Difficult Diagnosis
for unborn or infant children
is available in the communities where families receive a difficult diagnosis of their unborn or infant child and brings awareness
of the support that is available to families facing a rare or difficult diagnosis.
offers a broad overview of services that support family’s social, emotional, medical, financial and spiritual needs
for families who request services. Their vision is to increase access and utilization of appropriate coordinated case
for our nation’s tiniest of citizens.
Emmanuels Foundation supports families in a pregnancy or with a child having a rare or difficult
medical diagnosis by helping to tap into support resources in their immediate
area to meet specified needs in a timely manner. Striving together building
stronger communities to support families through critical issues, companion parents in their emotional journey and encourage
parents to be their child's best advocate.
EF Printable Tri-Fold Brochure in PDF
Letter to Physicians treating mother/child with an Incompatible with Life diagnosis or treating child with
the medical intervention or treatment for my child is …
I am working to try to find the best resoucres for parents who are experiencing a negative prenatal diagnosis.
Please don't simply rely on what you hear. I have heard of many horrible stories where families felt (afterward)
as if they had been mislead.
Seek for yourselves, find the source ... the truth is different from that which is typically written. If you
have been given a negative prenatal diagnosis, please review the section below on creating a birth plan. It has links
to many sites that will help you support your childs shortened life and be faithful to your humanity.
Trisomy 13 Family Support
Prenatal Partners for Life!
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!
Patients Plan of Care
End of Life Issues
In making your childs birth plan, in the case of a Trisomy 13 diagnosis,
you may want to peruse the following resources to find material your medical community will respect to support the decisions
you make about your childs care.
- Hippocratic Oath - Old versus Modern definitions
- Rights of a Child according to the Geneva Declaration
Christian Catholic Catechism (2276 - 2279)
Sick or handicapped
persons should be helped to lead lives as normal as possible.
Definitions explaining euthanasia is a controversial issue because of conflicting religious and humanist views.
Declaration on Euthanasia -
Today it is very important to protect, at the moment of death, both the dignity of the human person and the Christian
concept of life, against a technological attitude that threatens to become an abuse. Thus some people speak of a "right to
die," which is an expression that does not mean the right to procure death either by one's own hand or by means of someone
else, as one pleases, but rather the right to die peacefully with human and Christian dignity.
"As for those who profess other religions, many will agree with us that faith in God the Creator, Provider and Lord
of life--if they share this belief--confers a lofty dignity upon every human person and guarantees respect for him or her."
Charter for Health Care Workers
fills a gap which has been clearly observed not only in the Church, but by all those identifying with the Church's primary
task to advance and defend life.
The extraordinary progress
of science and technology in the immense field of health policy and care have made bioethics, or the ethics of life, a discipline
in its own right. Hence the need - rigorously responded to by the Charter for Health Care Workers - to provide an organic, exhaustive summary of the Church's position on all that concerns affirming
the primary, absolute value of life in the health field - of all life and of the life of every human being.
Pro-Life and Pro-Choice: End of Life Issues
Living with Trisomy 13: Survivors experiences
Be Not Afraid
- An online outreach to parents who have received a poor or difficult prenatal diagnosis.
A Place to Remember
- Uplifting support materials and resources for those who have been touched by a crisis in pregnancy or the death of a baby
Trisomy E-mail Support Group
Family to Family Support Links for Families Coping with Trisomy
Articles, FAQ'S &
questions most are afraid to ask!
Why Carry a Dying Child?
Perinatal Hospice: Giving Terminally Ill Babies and Their Families an Alternative to Abortion.
Resources for Georgia Residents
Trisomy 13 Post Pardum
Resources for Georgia Residents
Babies Can't Wait (BCW) is Georgia's statewide interagency service delivery system for infants and toddlers with developmental delays or disabilities
and their families. BCW is established by Part C of the Individuals with Disabilities Education Act (IDEA) which guarantees all eligible children, regardless of their disability, access
to services that will enhance their development.
The Individuals with Disabilities Education Act (IDEA) is a federal law ensuring services to children with disabilities
throughout the nation. (IDEA) guarantees all eligible children, regardless of their disability, access to services that will
enhance their development. SO if you are interested in getting a specific goal incorporated into your Childs IEP, it would behoove you to know
how these laws can help you support your educational goals.
Part C is for Infants and toddlers with disabilities (birth - age 2) and their families receive early intervention services
Part B if for Children and youth (ages 3-21) to receive special education
and related services under IDEA.
States and territories expand and further define the federal regulations
by crafting their own laws and regulations. Schools, districts, and state offices of special education must comply with the
federal special education law and regulations as well as their own state’s policies, including state regulations.
To find help developing goals for your Childs IEP, click
thes link above and go to the bottom of this URL to find links to "State Special Education Regulations” and “States'
Part C Rules, Regulations and Policies: On-line resources”. Not all states are listed. Get out your reading
glasses and ask for help if are trying to meet a specific goal or have it supported by a law or regulation. Educational
Advocates are available to help if you are having a difficult time as you learn the ropes.
More to Come on Developing IEP's SOON
Georgia PINES, which stands for Georgia Parent Infant Network for Educational Services, is a statewide
home intervention program available to families of infants and toddlers with sensory impairment, 0-5 years of age. All
services are free to families. In order for a family to be eligible for services from Georgia PINES, their child must have
either a visual or hearing impairment, or both.
The Marcus Institute
- Turning Disabilities in Possibilities - Finding effective services for children with disabilities and learning problems
can create a constant struggle for their caregivers. The Marcus Institute reduces the stress of that search by offering the
most comprehensive diagnosis, therapy and care management possible for a wide range of disabilities and learning problems.
Georgia Advocacy Office - GAO has been designated by Georgia as the agency to implement Protection and Advocacy
within the state. Its mission is to work with and for oppressed and vulnerable individuals in Georgia who are labeled
as disabled or mentally ill to secure their protection and advocacy.
Governor's Council on Developmental Disabilities - The state planning council is charged with creating systems change for people with
developmental disabilities and their families to: increase independence, inclusion, integration and productivity for people
Georgia Department of Education, Division for Exceptional Students - This web site for Special Education in Georgia contains information on programs and
services and special education laws.
Georgia Parent Mentors - Parent mentors are moms and dads of children with special needs who serve as a liaison
between parents and schools. They work within the school system to nurture communication and try to build bridges between
home and school.
Parent to Parent of Georgia provides support and information to parents of children with disabilities. One of the most meaningful sources of support are
other parents who have experienced parenting a child with a disability. Make contact with your local office and
they will put you in touch with a family in your area experiencing the same or similar diagnosis.
Parents Education Parents and Professionals (PEPP, Inc.) is a 501 c3 non-profit corporation dedicated to improving the quality of life dreams for all families with
disabilities by providing the most up to date resources on activities and educational events throughout the state of Georgia
and on a national level.
Bobby Dodd Institute
- Most Georgians associate Bobby Dodd with Georgia Tech and his phenomenal years coaching winning football teams. His work
on the gridiron inspired generations of Tech football fans, but for adults with disabilities, he has become even more of a
legend. In the 1960s, Dodd worked to ensure that Atlantans with disabilities were given the opportunity to fulfill their potential.
He became their voice and rallied others to speak out on their behalf. He urged the community to "wake up to the tremendous
potential and desire to work of our disabled brothers and sisters. The more you see of persons with disabilities," he said,
"the more you care about them and the more determined you become to do all in your power to see that they get the best possible
chance in life."
Resources Outside of Georgia
The Florida Directory of Early Childhood Services (Central Directory) has provided services to thousands of families and providers seeking advocacy, education, training, resource and referral,
and information on disability services available in their communities.
VIRGINIA: The Infant and Toddler Connection of Virginia is a system of services and supports designed to promote the greatest possible developmental outcomes for Virginia's
infants and toddlers with developmental delays or disabilities. The system has been established in accordance with the
Individuals with Disabilities Education Act (IDEA), Part C - Early Intervention.
You have life's tough questions?
Chances are - they've already been answered ...
A famous person once said, "Seek and you shall find" ...
I invite you to explore places where lifes toughest questions are given
The Catechism Online
- easy to look through table of contents that help guide the reader to passages that explain fundamentals of christianity
and most frequently asked questions about our faith. This is truly a point and click site by topic.
For reference to a specific paragraph of the catechism, use the link below for a different online version that makes
searching by paragraph easier.
Everyone is responsible for his life before God who has given it to him. It is
God who remains the sovereign Master of life. We are obliged to accept life gratefully and preserve it for his honor and the
salvation of our souls. We are stewards, not owners, of the life God has entrusted to us. It is not ours to dispose of.
THE BIBLE Online
Todays Scripture readings around the world in the Catholic Church
: Living to defend the faith given to us by Jesus Christ. Recognizing we are in a constant battle of good vs evil,
we ask for intercession.
Home to popular free Catholic CDs, audio tapes, and books, Catholic news and commentary, and the Best Catholic Links on the
web. Worth a visit.
COMMUNICATION IN PATIENT CARE
Felice E. Miller, Ph.D.,
Effective Communication: Getting the Best Health Care for Your Child.
August 9, 2006 URL: http://www.madisonsfoundation.org/content/3/2/communication.html
Stephanie J. Lee, Anthony
L. Back, Susan D. Block and Susan K. Stewart, (2002) Enhancing
Physician-Patient Communication, Hematology Online,
August 9, 2006 URL: http://www.asheducationbook.org/cgi/content/full/2002/1/464
By Karen R. Sepucha, Jeffrey K. Belkora, Debasish Tripathy,
Laura J. Esserman, (2000) Building Bridges Between Physicians and Patients: Results of a Pilot
Study Examining New Tools for Collaborative Decision Making in Breast Cancer, Journal of Clinical Oncology,
Vol 18, Issue 6 (March), 2000: 1230-1238
August 9, 2006 URL: http://www.jco.org/cgi/content/abstract/18/6/1230
Steven Parker, Barry Zuckerman, Marilyn Augustyn, Developmental And Behavioral Pediatrics:
A Handbook for Primary Care (2005) Lippincott Williams & Wilkins.
August 9, 2006 URL: http://books.google.com/books?vid=ISBN0781716837&id=YCH-RW2rj9oC&printsec=toc&dq=Korsch,+B.,+and+Harding,+C
M. A. Stewart, Effective physician-patient communication
and health outcomes: a review, Canadian Medical Association
Journal, Vol 152, Issue 9 1423-1433, (1995) Canadian Medical Association.
August 9, 2006 URL: http://www.cmaj.ca/cgi/content/abstract/152/9/1423
By Moira A Stewart, Judith
Belle Brown, W Wayne Weston, Ian R McWhinney, Carol L McWilliam, Thomas R Freeman, Patient-Centered Medicine: Transforming the Clinical Method, Sage Publications, 1995.
August 9, 2006 URL: http://books.google.com/books?id=96m4ncdHKoUC&printsec=frontcover
Korsch, B., and Harding,
C. The intelligent patient’s guide to the doctor-patient relationship Learning
how to talk so your doctor will listen. New York: Oxford University Press, 1997.
MORE TOPICS COMING SOON!
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as his story is shared with others facing similar challenges: