Trisomy 13 teaches a family about grief

joebarry//May 23, 2012

Trisomy 13 teaches a family about grief

joebarry//May 23, 2012

It was a moment the expectant mother will never forget.

During a routine ultrasound in July of 2011, doctors noticed some abnormalities in Devany LeDrew’s 22-week-old pregnancy. She was immediately referred to a specialist in maternal fetal medicine for an amniocentesis. The diagnosis: Patau Syndrome.

Patau syndrome—also known as Trisomy 13—is a genetic disorder that occurs when three copies of the genetic material from chromosome 13 are produced instead of two. According to the U.S. National Library of Medicine, the extra copy of Chromosome 13 can result in a variety of symptoms including cleft palate, close-set or small eyes, extra fingers or toes, mental retardation, seizures, skeletal abnormalities and congenital heart disease. More than 80 percent of infants born with Patau Syndrome die within their first year of life.  It occurs in about 1 in every 10,000 births.

Doctors told LeDrew that her child—a girl that would be named Violet—would likely live for as little 2 ½ days due to heart complications. “It was one of the most difficult experiences of my life,” LeDrew recalled.

Coping as a family

The LeDrews chose to continue the pregnancy, hoping for a miracle and trying to digest the reality of the diagnosis.

LeDrew and her husband, Rob, of Annville, had a preschooler at home who was just beginning to understand she would soon have a little brother or sister. “I had already bought my 2-year-old daughter, Evelyn, a big sister T-shirt and she had already begun referring to her new sister as ‘Baby Vi,’” she said.

According to Trish Benton, a bereavement counselor at PATHways Center for Grief & Loss in Lancaster, on average, most children do not fully understand the concept of death until around age 7 or 8. There are several approaches parents can use as they begin to teach children about death, including using props such as a dead bug or the leaves as they fall off of trees in the winter.

LeDrew said she was grateful to learn that her daughter had Patau syndrome well before her due date. But while Evelyn didn’t really understand she would lose her new sister, coming to terms with the ultimate loss of their second daughter was heartbreaking for the couple.

The doctors’ estimate unfortunately proved accurate.

Violet Marie LeDrew was born Nov. 2, 2011 at 4 pounds, 10 ounces. She passed away peacefully in her father’s arms on Nov. 4, 2011. “You have to mourn for your dreams of raising baby Violet, as well as mourn for the person she could have been,” LeDrew said.

Benton said she finds in most cases, coping with the loss of a child is more devastating than that of a spouse or parent.

Reaching out

LeDrew said she was especially grateful for the support she received from others during and following her pregnancy.

One organization that the LeDrews found particularly helpful throughout the course of their pregnancy was Sustaining Grace (www.sustaininggrace.org) which provided the family with a teddy bear that plays a recording of Violet’s heartbeat. “It’s nice to have things that quickly bring back my memories of Violet,” LeDrew said.

To help cope with the loss of a child at birth, Benton recommended that parents save memorable items to look back on. “Hospitals now recognize how important this is,” she said, and often give parents the blankets their baby was wrapped in, hand prints and foot prints, a lock of hair or the tape they used to measure the baby’s length. “We host memory box building events where parents and children can build and fill a box with special memories of time spent with a lost loved one or personal messages,” Benton said.

LeDrew hopes that more women who have experienced a baby during or soon after birth will open up and speak about their experiences. She said she has found that talking about her experience has been an important part of healing, but that it also makes many people feel uncomfortable. She wants other mothers to know that talking about the experience of losing a child is nothing to be ashamed of and hopes that more people will openly discuss their experiences in the future.

Joe Barry is the digital editor of Central Penn Parent Magazine.

The Devany family will accept donations to Sustaining Grace in memory of Violet on her first birthday Nov. 2. They plan to host a fundraiser each spring. For more information or updates, visit www.stillplayingschool.com.