“They [our doctors] were recommending that we terminate the pregnancy, because ‘what’s the point? Your child is not going to make it so you’re just delaying the inevitable.’”
This is how Thomas and Elizabeth Gravely recount the experience of learning their unborn child had a fatal chromosomal condition. However, the Gravelys resisted pressure to abort and were blessed with seven months with their son, Thomas, Jr.
“I would not trade the many moments of joy and peace for all of the suffering that came from Thomas’ diagnosis and passing. Thomas inspired more people in his seven months than most do in their lifetimes,” writes Elizabeth.
>>> Doctors Told Me To Abort My Disabled Child, But He Became #MyUnintendedJoy, the Federalist
Tragically, many parents that are faced with the diagnosis of a fetal abnormality are told that their baby is “incompatible with life.” This is particularly common for babies diagnosed with various forms of Trisomy. According to Trisomy.org,
“Trisomy refers to three copies of a chromosome. When three copies of any one of the chromosomes are present, rather than the normal two, the outcome is 47 chromosomes in the cell, instead of the usual 46. In the case of trisomy 18 and 13, this extra chromosome results in congenital malformations, serious developmental and motor delays, and a high incidence of mortality.
Trisomy 18 (Edwards syndrome) is the second most common autosomal trisomy syndrome and trisomy 13 (Patau syndrome) is the third most common autosomal trisomy syndrome with trisomy 21, Down syndrome, being the most common.”
March is Trisomy Awareness Month, and here at the March for Life, we want to spread the message that every life is compatible with love.
Thankfully, many families like the Gravelys have shared their stories of choosing life despite their difficult circumstances. The medical community is also showing advances in programs to care for families who continue their pregnancies despite grave prenatal diagnoses. The Wall Street Journal recently reported on one such program at New York Presbyterian Children’s Hospital. The pioneering doctor who heads the program, Dr. Elvira Parravicini, encourages mothers and fathers to hold their child as much as possible after birth. “They need to live a beautiful life, enjoying whatever is possible for them to enjoy,” she says.
>>> When Parents Know Their Newborns Won’t Live Long, the Wall Street Journal
Furthermore, there are many wonderful resources available to parents facing a difficult prenatal diagnosis. See our compilation below and please feel free to share.
Parents facing a poor prenatal diagnosis deserve love, compassion, and high-quality care and support. We hope you will join us in spreading the message this month that every life is a gift and sharing these wonderful resources.
Now I Lay Me Down to Sleep – a ministry of professional photographers will take photographs of infants who have critical medical conditions for no charge.
Be Not Afraid – a comprehensive website helping parents with prenatal diagnosis get information and referrals
SOFT – The Support Organization for Trisomy 18, 13 and Related Disorders.
International Trisomy Alliance – featuring e-books to help Trisomy families and their most recent “Trisomy 18 and Trisomy 13 – Preparing for your Baby’s Arrival.”
American Journal of Medical Genetics Report – “Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of Trisomy 13 or 18.
Gift of a Lifetime – a resource from Focus on the Family for families facing a life-limiting diagnosis for their unborn baby, that presents the option of perniatal hospice. Also, in Spanish, Un Regalo Inimitable.
When Love Wins – a booklet from Focus on the Family about continuing a pregnancy after an adverse diagnosis, and it addresses a prenatal diagnosis of special needs.
Be A Voice – Focus on the Family’s Dignity of Human Life magazine with Scripture, quotes, research, stories, etc about life issues across the spectrum, including special needs.
Embracing Grace Peer Ministry, Diocese of Richmond.
Prenatal Diagnosis Support, Archdiocese of Philadelphia.
Archdiocese of Washington Affirming Life Initiative – Resources for Clergy and Pastoral Workers, including training videos.
Prenatal Partners for Life – prenatal diagnosis website and support information.
Caring Bridge – a free social network tool for parents who have children with medical challenges.
Sibling support: “Sib shops” provide support to brothers and sisters of persons who have special health care needs, have developmental disabilities or have a mental health challenge.