Nearly five months into her pregnancy, Mary Kellett learned that her preborn son, Peter, likely had Trisomy 18, or Edwards Syndrome—a very rare chromosomal condition.
According to the Trisomy 18 Foundation, Trisomy 18 is an error in cell division that’s revealed through a blood test and ultrasound and that results in developmental issues and life-threatening medical complications. This condition is caused by an extra eighteenth chromosome in the developing baby and disrupts the normal pattern of development in ways that can threaten the life of the baby even before birth.
In Peter’s case, Mary’s routine ultrasound in her 19th week revealed markers for Trisomy 18. Doctors offered to perform an amniocentesis, but Mary and her husband, Don, refused, as they did not want to take the chance of harming their preborn baby. Doctors also informed the couple that babies born with Trisomy 18 did not live beyond two weeks and that most women choose abortion for babies receiving this diagnosis.
A beautiful miracle
Born via C-section after 34 weeks of pregnancy, Peter received the official diagnosis of Trisomy 18. Hospital staff encouraged Mary and Don to wrap Peter “in a blanket and let him go.” Doctors portrayed a devastating life for him, claiming he would be a burden on the hospital, society, his parents, and his 10 living siblings (the couple also has several babies who died in miscarriage).
Mary and Don knew their son had a purpose, even if his life would be short. They took him home, and Peter learned to do things the medical professionals said would be impossible, like drink from a bottle and eat solid foods. While Peter had physical and mental challenges, he was loving and happy. He enjoyed music and was a delight to his family.
In 2008, a few months after Peter celebrated his third birthday, Mary began Prenatal Partners for Life, a Minnesota-based support group for families who receive adverse diagnoses before or after birth.
“At Prenatal Partners for Life, we offer life-affirming support, information, and encouragement to families who receive the news that their preborn or born child may have special needs or health issues,” explained Mary. “We continue that support for families raising kids with special needs or health issues. At Lumen Caeli [which means Light of Heaven], a support ministry within Prenatal Partners, we offer support, information, and encouragement to families who experience miscarriage or stillbirth. Every family receives individual help depending on their needs. We connect families with other families who have had the same or a similar diagnosis for life-affirming support. The pressure can be intense to abort those babies diagnosed before birth. The pressure to not provide needed treatment after birth can also be intense. We strive to help each family embrace the life of their child and help their child reach his full potential. We pray for our families and strive to be God’s love and light to them at a very difficult time.”
Sadly, and under questionable circumstances, Peter died when he was six-and-a-half years old—just three days after an appendectomy. Doctors told Mary and Don that Peter died as a result of an infection from his appendix and that his heart gave out. Because Peter’s abdomen was distended, the couple asked whether he was bleeding internally. The doctor said an ultrasound revealed only air. However, the doctor who conducted the autopsy said that Peter bled to death and had nearly a liter of blood in his abdomen. He also said that Peter had no infection.
After the couple requested Peter’s medical records, they realized the ultrasound scan from his diagnosing doctor was missing. Later, Mary and Don learned that the hospital Peter died in had an internal “futility-of-care” policy unbeknownst to the public.
“We had a big meeting with the doctors and others at the hospital where Peter died,” explained Mary. “It was a horrible meeting where we felt lied to and where our questions and concerns about Peter’s treatment went unanswered. Three different lawyers felt we had a strong malpractice case, but each declined to go up against the hospital. We have forgiven the doctors and all involved, and we pray for them.”
Loving support
Since they began Prenatal Partners for Life more than a decade ago, Mary estimates they have offered support, encouragement, and information to more than 3,000 individuals and even more through the sharing of their materials.
“Our ministry . . . has grown steadily. We now support families in every state several times over and in 50 countries,” said Mary.
In addition to Lumen Caeli, Prenatal Partners for Life now offers Family Grants and Funeral and Marker Grants to assist families with the practical needs they face and to help alleviate financial burdens.
Prenatal Partners also offers 3/4D ultrasounds as keepsakes so that the families have pictures of their babies and recordings of the baby’s heartbeat. According to Mary, “We also offer prayer showers for families. It is a beautiful way for families to come together and celebrate the life of their child.”
Prayer showers are much like baby showers in that guests bring gifts for the baby, but in addition to these gifts, guests also offer prayers—both verbal and written.
Baby Amelia
For Tim and Jodi Sandquist, the loving care and compassion from Prenatal Partners for Life comforted them after they learned that their preborn daughter, Amelia, has Trisomy 18 and hypoplastic left heart syndrome.
When Tim spoke to his pastor, Fr. Paul Shovelin at St. John the Baptist Church in New Brighton, Minnesota, he learned of Mary and Prenatal Partners for Life.
“[Fr. Paul] knew Mary from when he was growing up,” said Jodi. “We reached out to Mary, and she sent us a nice care package of a blanket, a song CD, and a lamb snuggly. She came over with a meal and helped us plan a prayer shower for Amelia. It was beautiful; we had a prayer service, and Mary led all our family and friends in prayer. [She even] provided the food and the cake. She had our family and friends write our prayers for Amelia that we [eventually put] in an album. She has offered to come to any doctor’s appointments with Tim and me. She looked over and read our birth plan and is constantly checking in with us about how we are doing, as well as continually praying for us.”
Prenatal Partners for Life also paid for a 4D imaging of Amelia at Enlightened Imaging in Bloomington. Jodi and Tim invited their family to join them, and all were able to see Amelia on a large screen in 4D.
“It was a beautiful experience, and we have pictures and a CD to keep forever,” Jodi said. “It really was a moment in which I will have the images in my mind forever to cherish. All her movements and her facial features were captured. Just in case we have a stillbirth, it will be so memorable to have those moments and images for a lifetime.”
A Christ-centered compassion
In addition to assisting families with food, prayers, clergy, and medical professionals, Prenatal Partners for Life also sends out books and other gifts that may be helpful to the parents.
“We offer bereavement support if a child does go home to heaven, and we have beautiful gowns made from wedding dresses to offer,” said Mary. “We help with birth plans and advocacy as needed. We go to doctor’s appointments if needed and make many hospital and home visits to take food and gifts. We have been blessed to speak at many conferences and to churches, universities, and other groups about our ministry and have had many interviews and articles written about us.”
For parents who feel they cannot care for a child with special needs, Prenatal Partners offers resources such as adoption agencies that have clients waiting to adopt and love a child with special needs.
“There have been families we have helped who felt adoption was the best thing they could do for their baby, so we always mention adoption to them if they think they cannot parent their child,” said Mary. “Sadly, some can’t make that decision but will abort instead. Adoption is a great act of love and takes great courage and selflessness. Any parent who has given up a child for adoption deserves our respect and support.”
Feedback over the past 12 years has been encouraging, and parents have expressed their immense gratitude for the understanding, compassion, and support Prenatal Partners for Life has offered them as they experience the most difficult times in their lives.
“People are grateful to not feel alone and to know there are others who understand and are praying for them. It is a blessing and honor to do this work. It is often heartbreaking, and we cry along with the families, but it is also full of love and hope in Jesus,” said Mary. “I really try to follow the Holy Spirit as far as Prenatal Partners for Life goes. I call Peter and the Holy Spirit the true founders and guides. All of our children have helped out, and several daughters are more actively involved. I hope they will continue the ministry in the future.”
For more information on Prenatal Partners for Life, visit prenatalpartnersforlife.org.
Prenatal Partners for Life has been an immense gift to many families. Below are additional CLM articles sure to inspire you:
“Facing the Fears of an Adverse Prenatal Diagnosis”
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