Family dealing with loss of son to Holt-Oram

Published 12:00 am Wednesday, January 31, 2007

EDITOR'S NOTE: The Advocate featured Tanner Williams – the son of Jennifer and Thomas Williams, a Greenville native – in a three-part series in December 2005 (see related stories).

Tanner, who died in November 2006, was born with Holt-Oram Syndrome.

This article appears courtesy of the Prattville Progress.

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By Alicia Harper

Tanner Williams fought every single day of his nearly two years of life. And every day, his mother, father and extended family fought alongside him.

Born Nov. 19, 2004, with Holt-Oram Syndrome - also known as heart-hand syndrome, characterized by abnormalities in the heart and upper limbs - Tanner was also diagnosed with atrioventrucular septal defect, the most common heart defect related to Holt-Oram.

Tanner, most recently featured in a July 19, 2006, edition of the Progress, underwent a dozen surgeries in his short life, including two open-heart procedures in a single day when he was a year old.

The doctors' prognoses were always grim, but Tanner - and his family - fought, and the child jumped every hurdle and began to thrive.

&#8220The doctors have said Tanner is not in the medical books,” his mother, Jennifer Williams, a native of Millbrook, said in a July 2006 interview. &#8220He does things the doctors can't figure out.”

Love made all the difference, Tanner's father, Thomas, said at the time.

&#8220The doctor told me that babies who feel love have will to live,” he said. &#8220If he feels he's loved, it makes me feel a little better.”

In fact, after nearly two years of living in hospitals - mainly at Children's Hospital in Birmingham - Tanner progressed well enough to come home Nov. 6, 2006, and his parents brought him to their Prattville home for a few &#8220normal” days, Jennifer said.

The Williamses cherished those days, and they always will. They ended up being Tanner's final days of life.

&#8220He was ready - they thought, anyway,” Jennifer said last week. &#8220He was growing and doing well. Everything he had at the hospital, he had at home - his ventilator, heart medications, breathing treatments and his feeding tube. It was very exciting, very normal. The best days were at home.”

For those few days, Tanner was able to be a toddler.

&#8220He would get so excited watching ‘Veggie Tales,'” Jennifer said, a broad grin sweeping her face.

Like most children, the most unlikely items became toys.

&#8220Out of all the toys that baby had, he liked to play with his cords - his feeding tube or his ventilator cord,” his mother said.

Three days after his homecoming, Tanner's heart stopped, a common but life-threatening situation.

Tanner was rushed to Prattville Baptist Hospital, where his heart was revived, but it proved to be too late. He never regained consciousness.

&#8220When his heart stopped, he lost too much oxygen to his brain, his kidneys, his organs,” Jennifer recalled. &#8220The only thing that kept him alive was life support.”

Tanner spent his last couple of days at his home-away-from-home, back at Children's Hospital. He died Nov. 12, 2006.

&#8220They couldn't really tell me what happened,” Jennifer said. &#8220I'll never understand it. The doctors knew that one day, he was going to die from his heart.”

While there is arguably no hurt like the loss of a child, Jennifer knows that her baby is at peace and without pain.

&#8220I lean on God,” she said. &#8220I deal with it one day at a time. I'm at peace with it because I know Tanner is in a better place, and he's not suffering.”

The Williamses are thankful to the support shown to them by the community and the people of Camellia Baptist Church.

&#8220The community has been a tremendous help,” Jennifer said. &#8220When Tanner died, we thought we had life insurance through my husband's work, but it was accidental (coverage). We had no money to bury him. The community really came through, especially our church, and helped us out.”

She is also appreciative to Tanner's extensive medical staff.

&#8220The doctors and nurses at Children's Hospital in Birmingham - you couldn't ask for better people to take care of your child,” Jennifer said. &#8220Tanner was their baby, and I never felt scared to leave him.”

Through all of Tanner's medical problems, procedures and struggles, Jennifer has no regrets.

&#8220As a mom, I feel selfish for trying to keep him alive for almost two years, but then again, I fought for him,” she said. &#8220If I could do it all over again, I would do it 10,000 more times.”

Throughout Tanner's fight for life, Jennifer said she never saw her son as being sick.

&#8220It was like my child had a special need, but to me he would have been treated like any other child,” she said. &#8220I wouldn't accept him dying. Now that I think about it, Tanner was very sick, but I wouldn't accept that. I was fighting a battle for my baby.”

Jennifer and Thomas always planned to have a large family, and they look forward to having more children.

&#8220Tanner was one hell of a baby,” she said, that mother's-pride grin coming back onto her face. &#8220He was precious, and I know I won't ever have another one like him. He had his own unique personality, and everything went his way or no way.”

Jennifer plans to make sure her future children know as much as they can about their older brother.

&#8220I'll tell them they had a big brother who was very brave and who fought for almost two years,” she said.