Adverse Prenatal Diagnosis & Disabilities

We pray for all those families suffering loss (and often so many emotions – grief, love, joy, hope, pain).  Here are some stories, videos and resources.  If you need help, would like to be referred to a priest, or have other resources you’d like to share, please contact life@archbalt.org.

A letter to a mom with a prenatal Down Syndrome diagnosis

More family stories and videos below (following these resources)

Prenatal Partners for Life is a group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents.  We offer support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis. We have many resources such as adoption agencies with clients waiting to adopt and love a special needs child should a parent feel they could not care for them. We believe each child is a special gift from God.

Benotafraid.net 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 benotafraid.net 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.

Isaiah’s Promise is a group of parents who knew early in our pregnancies that our babies had severe or fatal birth defects. Each of us, for various reasons, continued the pregnancy. It’s a difficult and very personal decision.

Chesapeake Down Syndrome Parent Group is made up of 400 families who are all striving to help our children-those with and without Down syndrome-to reach their individual potential and find appropriate and comfortable places in the world. It takes a village to raise a child. CDSPG is yet another “neighborhood” in the “village” where we can turn for understanding, assistance and, when necessary, some humor to help us meet the challenges we face as parents of children with special needs. We look forward to hearing from you and meeting you and your family. If you need us, we are here to help mak your journey into the world of Down syndrome both an informative and joyful one.

International Down Syndrome Coalition for Life is dedicated to promoting the dignity and respect for all individuals with Down syndrome, from conception and throughout life. We are a coalition that has worldwide representation. Our mission is to celebrate and enhance the lives of individuals with Down syndrome, as well as to ensure fair and accurate representation in the case of prenatal diagnosis. IDSC For Life will accomplish this mission by educating medical staff and families with a prenatal diagnosis, as well as offering current and up to date information. The IDSC For Life also extends compassion, and hope for healing, to the families who lost their children when they ended their pregnancies. Our hearts and prayers go out to them.

Archdiocese of Baltimore Office for Disabilities

Now I Lay Me Down to Sleep trains, educates, and mobilizes professional photographers to provide free heirloom photos to families facing the untimely death of an infant.  We believe these images serve as an important step in the family’s healing process by honoring the child’s legacy.

Perinatal Hospice and Palliative Care: A Gift of Time lists the local perinatal hospice programs for parents who have received a prenatal diagnosis that indicates their baby likely will die before or after birth.

National Catholic Bioethics Center (NCBC) has a free 24 hour hotline that can help with some of the tough choices and ethical decision making with end of life care.

Families’ Stories:

• Choosing Life More Abundantly, a blog about the life of Joseph Angelo (2013)
• “Perinatal Hospices Help Young Mothers Cope with the Impending Deaths of Their Babies,” Baltimore Sun (July 2013)
• “Parent of Seven Children Reject Abortion to Have Baby with Trisomy 18,” LifeNews.com (August 2013)
• “Picture of Baby with Trisomy 13 Surviving 116 Days Goes Viral,” LifeNews.com (2013)
• “Loving Alexander“
• “Meet Celeste: Born at 22 weeks, she only lived 3 hours, but her life changed the world,” LifeSiteNews (2013)
• “St Ursula Couple Chose Life, though it also meant Death,” Catholic Review (2012)
• “Rosemary’s Gift: Enriching Multitudes in her brief, but beautiful life,” Sisters of Life, Faith: The Gift to See (Winter 2012)
• “Beautiful Poem Remembers Baby Who Lived for Just Two Hours After Birth,” LifeNews.com (August 4, 2014)
  • “a friend who is a Carmelite nun said something to me after Rosemary died that was so incredibly comforting, she said, ‘Mary, you prepared Rosemary for heaven, you did your job as a mother, because all she knew here on earth was love and when she got to heaven, it would have felt very familiar to her because love is the language they speak there.'”

Some beautiful videos:

• Our Curse – Oscar-nominated documentary about a young couple falling in love with their son who struggles with Ondine’s Curse.  by Thomasz Sliwinski, NY Times Opinion Video (February 3, 2015)
• I will not forget you – Isaiah’s Promise 2015
• John Paul – Ours for a Time – Irish mother shares the story of her son, John Paul, a witness to hope.
• “99 Balloons” – Eliot was born with an undeveloped lung, a heart with a hole in it and DNA that placed faulty information into each and every cell of his body. However, that could not stop the living God from proclaiming Himself through this boy who never uttered a word.
• “International Down Syndrome Coalition for Life WDSD March 21, 2012” – Asked parents if they could go back to right before they had or adopted their child with Down Syndrome what they would tell themselves.
• Sweet Audrey Girl – “This is our beautiful fourth daughter Audrey Caroline, and we marvel at the miracle that she was to us, even in just 2 1/2 hours.  God never sees the story broken and in pieces the way we do; He sees it as part of the magnificent tapestry of our lives, bringing Him the glory He deserves. We love, you sweet baby girl, and we miss you so, so much. Soli Deo Gloria…”
• Perinatal Hospice Video – Shares information about perinatal hospice through the story of the Warren family.
• Footsteps – In Memory of Our Triplets – This family did not receive an adverse prenatal diagnosis, but lost their three children after premature delivery.  This video is a tribute in memory of their triplets Bernadette, Adam and Christine. (conceived naturally a month after they got married).
• The Congratulations Project – 3 children read letters to parents who are expecting a baby with Down Syndrome.