Families experience tragedies but march onward

Families experience tragedies but march onward

The first March for Babies took place in San Antonio on Oct. 7, 1970, and has been a staple event in communities all across the United States ever since.

“March for Babies is held in 1,100 communities across the nation,” the March for Babies website states. “Every year, 7 million people, including 20,000 company and family teams as well as national sponsors, participate. The event has raised more than $1.7 billion since 1970.”

The walk, set locally for this Saturday, April 20, at Lamar University, has touched the lives of millions of people, including families who have experienced the tragic deaths of premature infants.

Nearly a half million babies in the United States — 1 out of every 9 — are born premature each year, according to statistics from the Center For Disease Control (CDC). Premature birth is a birth that occurs at least three weeks before a baby’s due date — less than 37 weeks (full term is 40 weeks).

“Important growth and development occurs throughout pregnancy — especially in the final months and weeks,” the CDC’s website states. “Although babies born very preterm are a small percentage of all births, these very preterm infants account for a large proportion of infant deaths. More infants die from preterm-related problems than from any other single cause.”

Carrying more than one baby at a time (twins, triplets etc.) is one of several risk factors for premature birth, as 30-year-old Groves resident Erin Tabor found out in 2012. Tabor was pregnant with twin girls and went into labor at 36 weeks.

“Everything was pretty much fine until I started having contractions and I went to the hospital,” she said. “That’s when they told us that Olivia had died. At that point, they decided to deliver both of them.”

According to Tabor, one of her twin daughters, Olivia, fell victim to intrauterine fetal demise (IUFD, better known as “stillbirth”), a death that occurs in utero and only affects approximately 1 percent or 30,000 pregnancies per year, according to unboundmedicine.com. The website states that 25 to 35 percent of fetal deaths are unexplainable. This was the case with Olivia, Tabor said.

“We really don’t know what happened,” she said. “There was some sort of hemorrhage. When they broke her embryonic sac, it was full of blood. They sent the placenta to pathology, but they didn’t really find anything.”

Even if a mother experiences “a perfect pregnancy,” this doesn’t necessarily mean that her child will evade premature death, according to the CDC.

Unfortunately, Johnette Simonetti, 32, of Vidor, found this to be a horrifying truth in 2010.

“We had the perfect pregnancy — everything went right,” she said. “At seven months, I was in labor for two days and didn’t know it because it was my first pregnancy. That night I went to the hospital and they stopped my contractions.”

The doctors told Simonetti, who was seven months pregnant, that they needed to take her baby, also named Olivia, early.

“The next morning they did an ultrasound and noticed that she had lots of problems,” Simonetti said. “She had fluid around her lungs, brain and heart. She had some abnormalities to her arms and hands.”

The doctor sent Simonetti to a specialist in Houston around eleven o’clock that morning and she had the baby that same night.

“She was born at 3 pounds and 15 inches,” she said. “She lived for 35 minutes. I got to hold her and meet her.”

After Olivia Simonetti’s funeral, her mother went to a genetics doctor to try and find out what went wrong.

“It was a freak-of-nature type thing,” Simonetti said. “The perfect pregnancy that we thought we had turned out to be devastating.”

Despite the tragic stories of both Tabor and Simonetti, the women said they have found relief from their grief through the March of Dimes organization’s annual event, March for Babies.

“During my maternity leave, I went on Facebook, and saw where a girl had posted about March for Babies,” Simonetti said. “I looked into it and created a team called ‘Olivia’s Dream.’ The first year (2011), we had about 30 people who walked and we raised about $4,000; we were the top family team that raised the most money and last year, we were in the top four. We actually raised $200 more than we did the year before.”

Simonetti said that walking in the March for Babies helped her deal with her loss.

“I needed that tremendously,” she said. “There was so much support and love for me, my husband and my family. The more I shared my story the more I realized that I am not alone. There are other people out there who have experienced something similar to what we have experienced.”

Tabor, who holds both a bachelor’s degree and master’s degree in psychology from Lamar University, said that walking in March for Babies can help families deal with the tragedy of losing a child.

“It’s important to give yourself time to grieve, but also doing things to honor them like this walk is important too,” Tabor said. “I don’t want to pretend like (Olivia) never existed and so doing things like this shows that she did exist and helps other babies who may have similar problems as she did, as well as helps in the grief process.”

At the 2012 March for Babies walk, Simonetti announced that she was pregnant again. She said she is currently 7-and-a-half-months along and has been on bed rest for 58 days. She said she plans to participate in the walk anyway, even if her husband has to push her in a wheelchair.

“I am at high risk and my baby is measuring small,” she said. “We’ve had all the tests run and everything came back OK.”

Tabor said she would walk this year not only in memory of Olivia, but also to honor her nephew, Levi, who also died due to premature birth.

“This year is our first year to have a family team,” Tabor said. “We’re walking to raise money for March of Dimes to help with their research. Hopefully no other families will have to go through what we did. They’ll be able to detect things earlier.”

The money raised by March for Babies helps support prenatal wellness programs, research grants, advocacy efforts for stronger, healthier babies, and newborn intensive care unit (NICU) research.

Tabor’s other twin daughter, Leila, who had to spend several days in NICU under an oxygen hood because her lungs were not fully developed, benefited from this research, made possible from grants by March of Dimes.

In preparation for breathing air, fetuses begin making surfactant while still inside the womb, according to the Gale Encyclopedia of Medicine. However, babies that are born very prematurely suffer from respiratory distress syndrome (RDS) and often lack adequate surfactant, a protein that keeps small air sacs in the lungs from collapsing. Therefore, they must receive surfactant replacement therapy immediately after birth in order to breathe.

“March of Dimes grantees helped develop surfactant therapy, which was introduced in 1990,” March of Dimes website states. “Since then, deaths from RDS have been reduced by two-thirds.”

Leila recovered thanks to her surfactant therapy and is a now a healthy 6-month-old baby girl, Tabor said.

“Everything is fine and she is growing like she’s supposed to,” she said.

Simonetti’s baby boy, who was supposed to be delivered this June, will most likely come early, she said.

“(The doctor) said I have news for you, this baby is coming in May,” Simonetti said.

Despite the anxiety surrounding yet another possible premature birth, Simonetti said that she is hopeful and March of Dimes has been extremely supportive to her.

“They call and check on me or e-mail me,” she said. “They’re always wanting to know everything is OK with me during this pregnancy and if there is anything they can do.”

Simonetti also has supporters more than 7,500 miles away in the city of Jubail, Saudi Arabia, where her father, David Thornborough lived for a couple of years and where her cousin Rhonda Richter, Rhonda’s husband Shannon Richter, and their two daughters live. Thornborough worked for Chevron Phillips Company in Jubail, and Shannon currently works there as well. Simonetti said that residents of the compound — comprised of Saudis, Americans and Europeans who work for the company and their families — hold a walk for Olivia’s Dream the same day as the March for Babies here in Beaumont. The money that is raised at the walk in Saudi Arabia is added to the funds that Simonetti’s March for Babies team, Olivia’s Dream, raises here in Beaumont.

“It just shows how people can get together and show support. It was very moving to me,” Simonetti said. “Every time we were walking over here at 10’clock in the morning, at the same time, they were walking over there at 6 o’clock at night. They did that the last two years, and they’ll be doing it again this year.”

The March of Dimes, which celebrates its 75th anniversary this year, is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com or nacersano.org.

For more information about March for Babies or to register early for the event, visit www.marchforbabies.org. This year the walk will take place at Lamar University and will start in a field between Brooks-Shivers Hall and the John Gray Center, 855 E. Florida Ave. in Beaumont. Registration begins at 9 a.m. with the 3-mile walk kicking off at 10 a.m.