Resources for Expectant Families with Adverse Prenatal Diagnosis
Long Island, Catholic Health
Gabriel’s Courage is a family-centered prenatal program for families who receive a life-limiting prenatal diagnosis during their pregnancy. The program offers a multidisciplinary team approach to care and support throughout pregnancy, birth and post-birth. A program of Catholic Health Services (CHS) and Good Shepherd Hospice, Gabriel’s Courage works in collaboration with the Diocese of Rockville Centre’s peer ministry initiative to provide care to families.
New York City
Neonatal Comfort Care Program
The Neonatal Comfort Care Program utilizes a multidisciplinary team to address the complex needs of infants and their families. The team includes a nurse coordinator, social worker, speech pathologist, child life specialist, psychologist, and chaplaincy, who all work together to create comfort for babies in a compassionate, loving environment.
Below is a talk by Dr. Elvira Parravicini, founder of the Neonatal Comfort Care Program, from the GIVEN forum.
Her passion for helping the most fragile patients in the neonatal population inspired Dr. Parravicini to create a unique and innovative program for infants affected by life-limiting or life-threatening conditions. The Neonatal Comfort Care Program addresses the complex medical and non-medical needs of infants and their families.
Entrusted with the Suffering of Others - Dr. Elvira Parravicini
Grieving Parents Retreat (Archdiocese of New York)
Emmaus Ministry Retreats: Serving the Spiritual Needs of Parents Whose Children of Any Age Have Died by Any Cause — No Matter How Long Ago
National
Elizabeth Ministry International
Supports women and their families with mentoring, support, inspiration and resources.
BeNotAfraid.net
A Catholic online outreach affiliated with Elizabeth Ministry. It is filled with stories from other families who faced the same poor prenatal diagnosis.
Prenatal Partners for Life
Provides information, support and encouragement (see “Facing the Fears of an Adverse Prenatal Diagnosis,” Celebrate Life, September-October 2008)
Jerome Lejeune Foundation USA
Down Syndrome Research, Care, & Advocacy
MISSION
While the Jerome Lejeune Foundation in France focuses on Research, Care, and Advocacy, the Jerome Lejeune Foundation USA centers its activities on Care and Advocacy. In March 2021, we opened a medical center pilot program for those with Down syndrome in Denver, Colorado, in partnership with Bella Health + Wellness.
United Angels Foundation
Supporting Parents and Families of Individuals with Special Needs
Visiting Angels, Educational Seminars, Support Groups, Resources, Connections
Isaiah’s Promise
Support for Families Carrying to Term After a Severe or Fatal Prenatal Diagnosis
Emmaus Ministry For Grieving Parents
“Blest are you who weep and mourn, for one day you will laugh.”
The mission of The Emmaus Ministry for Grieving Parents is to:
a. In the Catholic, Franciscan tradition of “All are Welcome,” serve the spiritual needs of grieving parents whose children of any age have died by any cause; and
b. help interested parents, as well as Clergy, Religious, Diocesan Staff, and/or Spiritual Directors bring this ministry to their own parishes or regions
DSDN Down Syndrome Diagnosis Network
Whether you are awaiting your child’s arrival or your baby has just been born, a new or potential diagnosis can seem overwhelming. We are here to help. DSDN will provide you with: support and connections, national and local resources, accurate, updated, unbiased information
Down Syndrome Advocacy Foundation
The Down Syndrome Advocacy Foundation (DSAF) was formed by a group of families that are striving to make a difference in the lives of individuals with Down syndrome. DSAF is dedicated to enhancing the lives of individuals with Down syndrome through advocacy and supporting inclusion within schools, communities, and the work place. A lack of consistency exists in the application of best practices for early intervention, education, and inclusion of individuals with Down syndrome in our communities, schools, and work environments.
Bringing the Sunshine Blog
“Life doesn’t have to be perfect to be wonderful.” – Andi Sligh
Videos
2022 March for Life: Katie Shaw, Down Syndrome Advocate
Abortion Rejected by Parents of Child with Down Syndrome
About Us: United Angels Foundation
Entrusted with the Suffering of Others - Dr. Elvira Parravicini
Books
A Special Mother is Born: Parents Share How God Called Them to the Extraordinary Vocation
by: Leticia Velasquez
The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration and Support for Raising Your Child From Diagnosis to Adulthood
by: Jen Jacob and Mardra Sikora
Teaching Reading to Children With Down Syndrome: A Guide for Parents and Teachers (Topics in Down Syndrome)
by: Patricia Logan Oelwein
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives
by: Kathryn Lynard Soper
Count Us In, Growing Up With Down Syndrome
by: Jason Kingsley and Mitchell Levitz
My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis
by: Madeline P. Nugent
(click here to see the review in the September-October 2008 Celebrate Life and her website offer testimonials and try to “make sense out what seems to be senseless”)
Social Media Groups
ACDS Parents and Friends, Facebook
Long Island Ds Mommies, Facebook
A Little Inspiration for the Journey
ACCEPTANCE
Accept Me
for what I am
Not what I could have been
or even will be.
Accept Me.
Acceptance must be
present tense
with no conditions
and based upon reality.
If windows of your heart
must rosy-tinted be
you have not accepted me.
See me as I am without distortion
of your dreams —
A human being beautifully unique
free to grow according to the seed within myself.
Accept me
so I need not twist myself to fit your pattern …
But resting in acceptance,
can grow.
DOWN SYNDROME CREED
My face may be different but my feelings the same
I laugh and I cry. I take pride in my gains.
I was sent here among you to teach you to love,
As God in the Heavens looks down from above.
To Him I’m no different; His love knows no bounds.
It’s those here among you in cities and towns
That judge me by standards that man has imparted
But the family He’s chosen will help me get started.
For I’m one of His children so special and few
That came here to learn the same lessons as you.
That love is acceptance; it must come from the heart.
We all have the same purpose though not the same start.
The Lord gave me life to live and embrace
And I’ll do it as you do — just at my own pace.
