Amy O’Mara’s pregnancy in 2016 began like a normal pregnancy. Already the parents of two daughters, Amy and her husband, Blake, were excited to discover their third child would be a boy. But with 12 weeks remaining in her pregnancy, the joy turned to sorrow with the news that their son had Trisomy 18. According to doctors, he had numerous complications that were incompatible with life.
“We took those nine weeks, and we cherished every day,” remembers Amy. “With our other two children, we were caught up in the small things like getting a nursery ready or getting a baby car seat. This was very different.”
According to the Trisomy 18 Foundation, Trisomy 18 is a genetic condition caused by an error in cell division, known as meiotic disjunction. A Trisomy 18 error occurs in about 1 out of every 2,500 pregnancies in the United States and 1 in 6,000 live births; many babies don’t survive past the second or third trimester of pregnancy.
“We made it to full term, praying he was born alive. He was and lived 10 minutes,” says Amy. “Knowing ahead of time, we were able to have our friends and family there and everyone got to hold Luke. His sister was able to hold him and count his fingers and toes.” But that time was fleeting. After his death, they were inspired to do something that commemorated their son, creating a foundation in his name.
“We had the desire to help anyone in a similar situation or grieving the loss of a child. We’ve been able to talk to couples during their pregnancy, seeing the blessings through the pain … someone who understands that heart ache of leaving the hospital without their baby.”
And thus, the Luke O’Mara Foundation was launched in 2017. During her hospital stay after the birth of their son, Amy noticed that the typical congratulatory new mom/baby items weren’t in the room, for obvious reasons, but the emptiness made it seem like a just a regular hospital room. It wasn’t about not having the items, but about not having the recognition that a child had just been born. They wanted to have something there for families in the future going through a similar loss. They decided to make memory boxes filled with items that they hope can bring comfort to families during their unimaginable loss. “We have a dear friend who makes the wooden boxes that the family can then use as a place to hold their treasured memories of their baby.” To date, they have distributed over 40 of these boxes to local families.
Since losing her son, Amy has participated in a number of family bereavement workshops and symposiums. It was during one of those held in Indianapolis that she discovered the CuddleCot.
Developed in 2011 by Flexmort, the CuddleCot system cools babies who are stillborn or die shortly after birth, allowing families to stay with their baby and form an important bond before being removed from them. The additional time ultimately helps families in dealing with their loss. “I came home and told my husband, ‘We need to have this available here.’ It seemed like a perfect thing for the Luke O’Mara Foundation to do.”
Thanks to their efforts and the generous donations of family and friends, DCMH Women’s Center has been gifted a CuddleCot from the Luke O’Mara Foundation. “You never expect to spend just a few minutes or hours with your child,” she says. “This equipment allows those parents to have that bonding time that they’ll never get again, a lifetime of pictures … families are given a little more time if they want. At least they have the option.”
As positive and enthusiastic as Amy is about this contribution, the profound pain of losing a child remains. “I don’t want to come across that our hurt isn’t still there. We still carry the weight of losing our son. We’ve grieved hard but grieved with hope. We’ve tried changing our ‘why did this happen’ to ‘what can we do with what God has given us’,” she says. “Without the gift of Luke, we wouldn’t have the opportunity to be helping other families. We’ve been able to see the hope in all of this; we’re able to smile knowing there’s still joy while there’s pain. Our journey was tragic but beautiful.”
Luke Edward O’Mara would have turned five this May. If you would like any further information or would like to make a donation to the foundation, contact Blake and Amy O’Mara at amyandblakeomara@gmail.com.