'Miracle baby' Tagg faces more surgery
by LaceyNancy Burton’s grandson is an 18-month-old miracle.
Burton, who has been working in the University Communications office for 23 years, welcomed the birth of grandson Taggert Burton Smith (Tagg for short) in March of 2009. "Nana," as Nancy is called by her family, considers herself blessed to have been present for Tagg's birth as she has with each of her seven grandchildren.
The son of Burton’s daughter Amy and her husband Steve Smith, Tagg seemed to be a perfectly healthy baby boy, just an hour after his birth doctors realized something was terribly wrong. Tagg wasn’t getting oxygen to his heart.
He was diagnosed with Tetrology of Fallot (TOF), a heart and lung ailment that occurs in five out of 10,000 births. He had right pulmonary artery stenosis and right pulmonary vein stenosis, overriding aorta, right ventricular hypertrophy and trachea stenosis. The result of these abnormalities is that Tagg’s body failed to receive enough oxygenated blood.
And, despite more than 15 life-saving surgeries and procedures now behind him, the biggest obstacle may be yet to come.
Tagg was born at 8:15 p.m. on March 5 in Lexington, S.C., weighing in at 6 pounds, 12 ounces and measuring 20 inches long.
According to Tagg’s mom, Amy, he was perfect. “Except for his extra toe,” she says.
Tons of e-mails, and photos and texts were sent out announcing the arrival of Tagg – all 10 fingers, 11 toes.
But a short hour later, Tagg was taken to the nursery where doctors noticed low oxygen levels. The next morning doctors heard a murmur, and Tagg was immediately sent to Palmetto Richland Hospital. There, the family’s ordeal officially began.
Since then, Tagg has undergone four open-heart surgeries (the first at five weeks, the fourth at 18 months), and he has had 12 airway surgical procedures.
But despite his struggles, Tagg has found a way to help others like him.
He and his parents, along with 11-year-old brother Emery, were chosen to be the 2010 ambassador family for CCU’s University Communications office team of the Waccamaw American Heart Association Start! Heart Walk. The event, a major annual fundraiser, was held at Market Common’s Valor Memorial Gardens on Oct. 16. Unfortunately, the family was unable to attend the event due to Taggert’s airway surgery Oct. 15 at MUSC.
Tagg is currently facing difficulties with a bronchial stent in his left lung that has to come out via the trachea. Another procedure is planned for Nov. 30. And, according to Amy, this is the scariest surgery yet.
“This is not something that is done often and it's very risky,” says Amy. “The other option is to remove it by open chest and of course we do not want to do that.”
The surgery will be a joint operation between the cardiology and ear, nose, throat (ENT) surgical teams. If a main vein is attached to the stent or if the bronchial stent gets caught on the tracheal stent during removal, Tagg’s airway and lungs could be blocked or damaged.
These types of procedures have a taken a toll on the Smith family financially.
“I can’t work like I did before his birth,” says Amy, who now sells Mary Kay cosmetics. “My new full-time job is caring for him and taking him to his many doctor appointments and therapies. And each procedure is extremely expensive.”
Tagg’s most recent heart valve replacement in September was a relatively “short” stay for the Smith family – only 12 days. The bill: $159,248.75. When Tagg spent 161 days in the Pediatric Cardiac Intensive Care Unit (PCICU) at MUSC in Charleston – the bill was in excess of $2.5 million.
“Our best guess of total medical bills for Taggert in his short 19 months is more than $3 million so far,” says Amy.
Fortunately, the Smiths have private insurance through Steve’s work, and Tagg has also qualified for Katie Beckett, a federal program that helps families who do not qualify for Medicaid. The Smiths also received help from friends and family during their six-month stay at the Ronald McDonald House at MUSC.
“If it were not for their help with food and gas costs and the greatly discounted daily rate at the Ronald McDonald House, I am not sure how we would have made it,” says Amy.
But despite the family’s rocky journey and what lies ahead, Tagg has found ways to warm hearts.
Amy says he’s learned to say “hi” (although he only says it to cats and dogs, regardless of whether they’re real or on TV – he even says it to older brother Emery’s stuffed puppy.)
Tagg has made miraculous progress. He’s even learned to walk with the help of leg splints and therapy bars. According to Tagg’s doctors, once his problems are corrected, he should live a full and normal life.
“To look at Tagg, you would never guess he has a health problem,” says Debbie Conner, who led a University team on the Heart Walk to support Tagg. “His eyes sparkle, and his smile is heart-warming. All of the medical staff says he looks like a little cherub, and they have fallen in love with this little charmer.”
Tagg’s other grandparents are Gene and Joan Smith of Parkersburg, W.Va. The Smith family now resides near Athens, Ga. And although it’s been a challenge (especially living so far from family), the Smiths feel so blessed to have Tagg.
“He has really changed our lives,” says Amy. “We have been introduced to a world we never knew existed, and have met friends along the way. We’ve learned to appreciate every little thing. Each milestone that most take for granted, we celebrate because he has fought so hard to make it. He has taught us to never give up. He has had so much thrown at him but continues to smile. It is hard to not be inspired by his determination.”
Nancy says she’s thankful for all the prayers from everyone at CCU.
“Our little miracle is proof of how they must be working,” she says.
To learn more about Taggert and his progress, visit Amy’s blog at www.caringbridge.org/visit/taggertsmith.