Parents Of Babies With Trisomy 18 Saying Goodbye To Support Group.For nearly two years, five families Bryan-College Station would probably have remained strangers to the group met monthly to play Baby Play support sponsored by Hospice Brazos Valley.The group, which was formed to help families with children born with a rare chromosomal defect trisomy 18, will meet for the last time Feb. 15.
Families have undergone several changes during this period - some encouraging, some heartbreaking - but one constant remains: Two years later, there is still no definitive answer on what may have caused the cluster of birth defects confirmed in the Brazos County.
History
Between August 2009 and February 2010, five families in the Brazos County designed for children who are born with trisomy 18. The defect occurs in the design and causes the baby to have three copies of chromosome number 18 instead of the usual two.
The prognosis is poor. Half of the babies with the defect are stillborn. Half of those born alive die within the first week - less than 10 percent live to see their first birthday.
According to the Texas Department of State Health Services, the higher number than usual of trisomy 18 births in the county of Brazos is a confirmed cluster and deserves investigation.
The data from the register of birth defects in Texas indicates that in the decade before, 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 July 30, 2009, was listed as a possible factor of the environment to be studied with respect to cluster. More of the five families believe exposure to the chemical release may have played a role in their children with defects.
Separate research by the DSHS, Anne Sweeney, professor of epidemiology at Texas A & M Health Science Center School of Public Health in rural areas, also focuses on the cluster.
A New Hope
Nate and Holly Sharp had three children happy and healthy and were delighted with the arrival of their fourth child, Kate Austyn, in June 2010. Tests carried out before his birth said she was healthy, but she was born with Trisomy 18 and lived only one month.
The loss was devastating for the family, but after much prayer, the couple decided their family was not complete and they wanted to have another child.
"We wanted to wait for some of the studies to be complete, but we knew we could not," Holly Sharp said, adding that research can take years to be released. "We talked to our doctor and some other specialists and they said 34 were not too old to try again and chances are nothing will go wrong.”
But in the back of her mind, she says, was the thought that the same complications affect the next child.
On Mother's Day last year, she discovered she was pregnant. She and Nate kept a secret for 14 weeks.
On January 5, the couple welcomed young Austin Sharp 8 pounds, 10 ounces - the largest of their four children at birth.
"I was just in awe of the miracle of life - all things that could go wrong and many times it is just out OK," Holly Sharp said. "I just remember being so recognizing that we had a healthy baby that we can see grow and love and cherish, but it is not a replacement. It felt like a new beginning of hope and healing. "
Other families in the support group for news of the birth of Austin meant the same thing for them.
Wendy Contreras - whose daughter Ella Rose was born September 30, 2010, with trisomy 18 and died less than a month later, Oct. 24 - said the birth was reported that healing finally was closer than grief.
"Obviously this was a huge blessing to their families, but for the rest of the group, I think it meant that there was a possibility that permanent damage has not been done for us," she said. "Healing is coming and I think we are all in better shape than we were a year ago."
Still the fight against
Stevie Avendano is the only baby born with trisomy 18 in Brazos County alive. In May, there will be 2 years. When he was born at 4 pounds, 14 ounces, doctors told his mother he would not live long enough to get back the results of genetic tests, or even long enough to be discharged from the hospital.
Now he is 20 months, and his mother, Michelle Suniga said his progress was a "roller coaster ride."
"There have been ups and downs," she said. "Just after he turned a year he started having seizures. But now it also develops their motor skills more than anyone thought he would be able to. "
Suniga says Stevie is on four different medications to keep seizures under control and still gets visits three times a week from a dietitian, a speech therapist and a physiotherapist. It is now 16 pounds, 9 ounces and 28 inches tall, but his hopes dietitian to provide more weight to improve his strength.
"I know we have our little complications, but it is actually very good health, his doctors say," Suniga said. "For us, it is more of just a normal baby - it begins to grow and it's amazing to watch."
Suniga said when approached its first anniversary, the family as celebrating early because no one knew whether he would live to see it.
"But now our mentality has changed - it's not, 'Oh my God, how do we get out of this," she said. "Because we know that there are obstacles on the way and we'll go through them."
Crève-heart
Maria Casares was the first Brazos County mother to give birth to a child with trisomy 18 in the cluster the most recent. His son, Hayden, lived with the default for seven months before his death in November 2010.
Cazares speaks little English, but her teenage daughter, Barbara Soto, translated for her during interviews with the eagle. Soto said her mother discovered she was pregnant again around the same time Holly Sharp does. Her pregnancy, however, ended in a miscarriage in July of last year.
"She really wanted another baby," said Soto. "We all hoped that we would be able to see Hayden through it, but thought it might have the same problems was almost as difficult as having the miscarriage.”
Researchers estimate that 95 percent of trisomy 18 due to an error in the design, although it remains uncertain whether this was the case when Cazares.
Soto said his mother is no longer considering having more children and spoke to the doctors to have surgery to ensure it will not.
Listen baby
Thanks to happier times and the most difficult of the journey of five families, "the only constant was the baby Play meetings the third Wednesday of each month.
Lynn Davis, a social worker who facilitates the group, said he is among the most durable support groups Hospice Brazos Valley sponsored.
At its last meeting on February 15, families will be able to meet young Austin Sharp for the first time.
"I do not know if there really ever a good time to stop a group of grief, because the parents will always be in mourning," Davis said. "But now they are in a place where they want give back and help others, and we are concerned, it is a good place to stop the group.”
Davis said the birth of Austin helped the group leaders and members come to the conclusion that families can continue to meet on their own without the help of play Baby Play.
"So, let's all 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. This is a good time to go and celebrate this new beginning. "
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