Parents of babies with trisomy 18 saying goodbye to support group

By MICHELLE CASADY
michelle.casady@theeagle.com

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Holly and Nate Sharp hold their 3-week-old son Austin while surrounded by their other children (from left) London, Kennedy and Jackson at their home Saturday.

For almost two years, five Bryan-College Station families who probably would have remained strangers have met monthly at the Play Baby Play support group sponsored by Hospice Brazos Valley.

The group, which was formed to help the families who had children born with the rare chromosomal defect trisomy 18, will meet for the last time Feb. 15.

The families have experienced several changes in that time -- some encouraging, others heartbreaking -- but one constant remains: Two years later, there still are no definitive answers about what may have caused the confirmed cluster of birth defects in Brazos County.

The history

Between August 2009 and February 2010, five Brazos County families conceived children who were born with trisomy 18. The defect occurs at conception and causes the baby to have three copies of the Number 18 chromosome instead of the usual two.

The prognosis is grim. Half of the babies with the defect are stillborn. Half of those born alive die within the first week -- fewer than 10 percent live to see their first birthday.

According to the Texas Department of State Health Services, the higher-than-usual number of trisomy 18 births in Brazos County constitutes a confirmed cluster and merits an investigation.

Data from the Texas Birth Defects registry indicates that in the decade prior, only eight babies were born with trisomy 18 in Brazos County.

In a preliminary report released by the DSHS in March 2011, the El Dorado Chemical Co. fire that caused Bryan to evacuate on July 30, 2009, was listed as a possible environmental factor to be investigated as it relates to the cluster. Several of the five families believe exposure to the chemical release could have played a role in their children having the defect.

Separate from the research being done by the DSHS, Anne Sweeney, a professor of epidemiology at the Texas A&M Health Science Center School of Rural Public Health, also is looking into the cluster.

New hope

Nate and Holly Sharp had three happy, healthy children and were excited for the arrival of their fourth child, Kate Austyn, in June 2010. Testing done prior to her birth indicated she was healthy, but she was born with trisomy 18 and lived just one month.

The loss was devastating for the family, but after much prayer, the couple decided their family wasn't complete and they wanted to have another child.

"We wanted to wait for some of the studies to be complete but we knew we couldn't," Holly Sharp said, adding that the research can take years to be released. "We talked to our doctor and some other specialists and they said 34 wasn't too old to try again and chances are nothing would go wrong."

But in the back of her mind, she said, was the thought that the same complications would affect the next child.

On Mother's Day last year, she found out she was pregnant. She and Nate kept it a secret for 14 weeks.

On Jan. 5, the couple welcomed Austin Young Sharp at 8 pounds, 10 ounces -- the largest of their four children at birth.

"I was just in awe at the miracle of life -- of all the things that could go wrong and so many times it just turns out OK," Holly Sharp said. "I just remember being so grateful that here we had a healthy baby that we can watch grow and love and cherish, but it's not a replacement. It felt like a new beginning of hope and healing."

The other families in the support group said news of Austin's birth meant the same thing to them.

Wendy Contreras -- whose daughter Ella Rose was born on Sept. 30, 2010 with trisomy 18 and died less than a month later, on Oct. 24 -- said the birth signaled that healing finally was closer than heartbreak.

"Obviously this was a huge blessing for their family, but for the rest of the group, I think it meant that there was a possibility that permanent damage wasn't done to us," she said. "Healing is coming and I think we're all in better shape than we were a year ago."

Still fighting

Stevie Avendano is the only baby born with trisomy 18 in Brazos County still living. In May, he'll be 2 years old. When he was born at 4 pounds, 14 ounces, doctors told his mother he wouldn't live long enough to get the results back from genetic testing, or long enough even to be discharged from the hospital.

Now he's 20 months old, and his mother, Michelle Suniga, said his progress has been a "roller-coaster ride."

"There have been some ups and some downs," she said. "Right after he turned a year he started having seizure activity. But now he's also developing his motor skills a lot more than anyone thought he would be able to."

Suniga said Stevie is on four different medications to keep the seizures under control and still gets visits three times a week from a dietitian, a speech therapist and physical therapist. He's now 16 pounds, 9 ounces and 28 inches tall, but his dietitian hopes to bring his weight up more to improve his strength.

"I know we have our little complications, but he's actually very healthy, his doctors say," Suniga said. "To us, he's becoming more of just a normal baby -- he's starting to thrive and it's amazing to watch."

Suniga said when his first birthday was nearing, the family considered celebrating early because no one was sure if he would live long enough to see it.

"But now our mentality has changed -- it's not, 'Oh my God, how will we get through this?'" she said. "It's that we know there are obstacles in the way and we will get through them."

Heartbreak

Maria Cazares was the first Brazos County mother to give birth to a child with trisomy 18 in the most recent cluster. Her son, Hayden, lived with the defect for seven months before he died in November 2010.

Cazares speaks limited English, but her teenage daughter, Barbara Soto, translated for her during interviews with The Eagle. Soto said her mother found out she was pregnant again around the same time Holly Sharp did. Her pregnancy, though, ended with a miscarriage in July of last year.

"She really wanted another baby," Soto said. "We were all hoping that we would be able to see Hayden through him, but the thought that he could have the same problems was almost as tough as her having the miscarriage."

Researchers estimate that 95 percent of trisomy 18 conceptions result in a miscarriage, though it remains unclear if that was the cause in Cazares' case.

Soto said her mother is no longer considering having more children and has talked to doctors about having surgery to ensure she won't.

Play Baby Play

Through the toughest and happiest times of the five families' journeys, the one constant has been the Play Baby Play meetings on the third Wednesday of each month.

Lynn Davis, a social worker who facilitates the group, said it's among the longest-lasting support groups Hospice Brazos Valley has sponsored.

At its last meeting on Feb. 15, the families will get to meet Austin Young Sharp for the first time.

"I don't know if there's ever really a good time to end a grief group, because those parents will always be grieving," Davis said. "But now they're at a place where they want to give back and help others, and as we're concerned, that's a good place to stop the group."

Davis said the birth of Austin helped the group's facilitators and members come to the conclusion that the families could continue meeting on their own without the help of Play Baby Play.

"So we'll all come together one last time in celebration of this amazing little baby," she said. "And I'm sure the families, who are like family now, will continue their bonding. It's a good time to move on and celebrate this new beginning."