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Premature baby faces medical challenges
Lauren Boone gazes at the crib set up for her daughter, Atlee, born July 20 with a number of medical problems.
SAN ANTONIO -- Tears streamed down the face of Nathan Boone as he recalled first hearing of the condition that would affect his then-unborn daughter.
“My first reaction was, ‘I’m dreaming,’” said Nathan, who works for R Construction, based in Floresville and serving the petroleum industry. “It didn’t seem real to me. After the doctors told us what we will be facing, it just didn’t seem real.”
Transplants to the San Antonio area following the boom in activity from the Eagle Ford shale, Nathan and his wife, Lauren, welcomed their second child, Atlee Grace, into the world July 20, more than a month early. Atlee faces tremendous challenges, not only from her premature arrival, but other factors, also.
During the course of routine doctor visits before her birth, the Boones learned of the hard road ahead for their daughter, diagnosed with VACTERL association -- vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities.
According to the U.S. National Library of Medicine website, VACTERL association is found in one of every 10,000 to 40,000 newborns. Defects in the vertebrae, or bones of the spine, are found in 60 to 80 percent of infants born with VACTERL association.
“Atlee doesn’t have thumbs and only has one bone in her right arm,” Nathan said. “The bones in her spine don’t stack up right ... .”
“She has an issue with her heart, but the doctor said that might heal on its own,” Lauren said. “When you find out something like this, you’re just in complete shock. You’re devastated; you want nothing but the best for your child. You go through phases of ‘Why me?’ But we are Christians and are assured of God’s plan.
“When I first found out, I was just like ‘What did we do?’ I asked myself what we could have done differently. You’re just scared of the unknown ... .”
Until Atlee was born, the unknown was the greatest strain -- not knowing the extent of her illness, Lauren said.
Atlee had her first surgery July 22 to correct a swallowing issue and connect a colostomy bag. Doctors must now work to create a rectum for the tiny tot, who was born without one. Doctors and hospitals will be regular features in her young life, as medical personnel work to correct, modify, or help the family find ways to cope with Atlee’s challenges.
Due to their strong personal convictions, terminating the pregnancy was never an option.
“The doctor didn’t even think we were going to be needing any of the testing needed for an abortion, because she knew it was never an option; she knew we were strong Christians,” Lauren said. “We will not interrupt God’s plan whatsoever. I know that some families that may go through something like this might only see the worst, but we know and trust in God’s plan.
“That doesn’t mean that it isn’t extremely difficult for us at times and there are moments of weakness where we feel down, but we are strong in our faith. There have been so many blessings that the Lord has already bestowed upon us since this whole thing started. Nathan and I have gotten a lot closer and stronger together. The outpouring of love and support from friends, family, and the community is truly humbling.”
“There are people who are living and dealing with way more than what we are,” Nathan said. “I have faith that everything will go according to God’s plan. Although this is a difficult time, we have been receiving some of the biggest blessings of our lives.”
Facing the challenges, Nathan said, “... we try and reflect on so many of the good things” Atlee has brought into their lives, even before she was born. “We try to stay positive and not think of the worst.”
Friends of the Boones and colleagues in the oil-field industry will host a benefit Friday and Saturday, Sept. 28-29, to help offset Atlee’s impending medical expenses. The benefit will feature a cook-off, silent auction, roping, and live entertainment, with all proceeds going to the Boones for Atlee’s medical expenses.
For more information about the benefit, call Sharmon Roberson at 903-390-0181. See “How you can help” for more about the benefit and ways to make the event a success.
See also: Benefit set; you can help
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