Tammy and Todd Sears

Staff Photo by Danielle Moore
Tammy Sears sits her son up in bed so she can feed him ice to ease his sore throat following the removal of his breathing tube. After an infection caused his kidney's to shut down, Tyler was intubated to secure his airway while on dialysis.

For three years, Tammy and Todd Sears have seen their firstborn son endure a half dozen surgeries and numerous infections as specialists try to mend his incomplete heart.

Walking a psychological tightrope between optimism and realism, between determination and acceptance, the Decatur, Tenn., couple said their different ways of coping have sustained them through the devastating knowledge that they will most likely outlive their child.

"I plan his funeral. She plans his wedding," said Mr. Sears on a recent fall afternoon as his 3-year-old son Tyler played on the plush carpet in his living room.

It was a week before Tyler would undergo his sixth and most recent open-heart surgery at Vanderbilt Medical Center in Nashville.

Born without a fully-formed left ventricle, Tyler has a heart that is half the size of a normal one, his doctor said. Tyler has spent literally half of his life in hospitals preparing for or recovering from surgeries and related complications as doctors work to reconfigure -- or in his mother's words, "jerry-rig" -- his heart into a more functional organ.

Having spent so much time in hospitals, Tyler cries at the sight of someone wearing scrubs, his parents said. Tyler also has some developmental and language delays, and only learned to crawl six months ago.

But on a recent afternoon at home he is energetic, crawling around the living room or squirming in his father's lap. He is round-faced and smiling, with a slightly blue-tinged complexion, due to the low-oxygen level of his blood.

His condition can be fixed with heart and lung transplant, if he qualifies medically, but that would only prolong Tyler's life by maybe five years, doctors say. The surgeries aren't to prepare him for a transplant, however, they're just to keep him alive.

His parents realize even if the surgeries succeed, his life may not be long.

"At this point we're lucky to see 10," Mrs. Sears said.

"We're grateful that we've had this time with him," Mr. Sears said.

Tyler's most recent surgery in late October was successful, but medications to combat a subsequent infection shut his kidneys down. So this year, Tyler and his family spent Thanksgiving in the hospital as he recovered.

Soon he'll get a few months at home before he faces more surgeries.

"His future's unknown at this point," Mrs. Sears said. "We're doing better now, especially since his kidneys are kicking in."

Spending the holidays away from home is nothing new to the Sears, since Tyler spent his first Halloween, Thanksgiving and Christmas in the hospital, she said.

But this year is harder, because the Sears have a 1-year-old daughter, Tabitha, who is home in Decatur with a live-in nanny.

"That makes it a little bit sadder but we'll make it up, and there will be many more," Mrs. Sears said. "You do what you gotta do and it's just another day in the hospital."

The Sears knew of their son's heart problems even before he was born. The news was delivered when Mrs. Sears was eight months pregnant.

"It floored us," Mrs. Sears said.

Almost 1 in every 100 babies, about 40,000 a year, has a congenital heart defect and 4 percent to 8 percent of them have Tyler's heart defect, known as hypoplastic left heart syndrome, according to the American Heart Association.

At Vanderbilt Medical Center, out of 500 pediatric heart surgeries a year, about 30 involve the condition, said Dr. David Bichell, head pediatric cardiac surgeon at Monroe Carell Jr. Children's Hospital at Vanderbilt.

But Tyler's complications, mostly resulting from problems in blood flow to his lungs, are less typical, said Dr. Bichell, who treats Tyler.

To treat the syndrome, doctors typically perform a series of three surgeries, known as a Norwood procedure, beginning soon after birth, to create a new pathway of blood flow to the lungs. The success rates are high, but "everything hinges on the condition of the lungs and the pulmonary arteries," which are weaknesses for Tyler, Dr. Bichell said.

"His lungs still have a ways to go and we're hopeful this new plumbing (from his most recent surgery) is going to encourage them to grow," he said.

For the Sears, the hardest parts of the past few years have been seeing their son in pain and feeling responsible for his discomfort.

"What do you do to save your child? You do anything you can," said Mr. Sears, a claims adjuster with Knoxville-based Appalachian Claims, an independent claims adjustment company. "We've watched him scream and suffer for 30 hours straight. ... I don't want to see him suffer. But what can you do?"

Helping others has been an outlet for Mrs. Sears, an engineer at TVA who has started a support group in Chattanooga for parents of children with congenital heart defects. Mended Little Hearts meets monthly.

She and her husband attribute their ability to spend so much time with their son to the generosity of both of their employers and her coworkers, who pooled and donated their medical leave to her. Mr. Sears' work has given him extended paid leave.

They are grateful for a comprehensive health insurance plan which has paid for more than $6.5 million worth of Tyler's care.

Dr. Bichell said the Sears have been a model of how to deal with a situation that no parent is prepared to confront.

"They have taken what some people are unable to face at all and they have embraced it, learned everything there is to know about it and are just keeping abreast of the cutting edge for how to deal with it," he said. "They are examples of strength that others could learn from."

LOOKING AHEAD

If the surgeries fail and the only choice is a heart and lung transplant, the Sears have decided they will forgo the operation and focus on comfort care.

"How much can a little body take?" Mrs. Sears said at her home a few weeks ago as Tyler played with his little sister.

Mrs. Sears reached for Tyler and lifted his shirt, displaying a patchwork of scars along his ribs and chest. The scars aren't hard for her to look at, she said.

"That's a reminder of what he's been through and the fact that he's still here. They're just his battle wounds," she said.

Chattanooga pediatrician Dr. Nita Shumaker, who has treated Tyler since he was 6 months old, said Tyler is doing great considering all he's been through.

Following his most recent infection, "he's just now started turning the corner and looking good," she said. "This family is just an inspiration to everybody, (proving) that even with a complicated kid you can give them a normal life and they can enjoy things that normal kids do."

When Tyler recovers from his most recent infection and after the winter flu season, the Sears say they plan to take him out as much as they can, to Nightfall music concerts in the summer and the Chattanooga Zoo, balancing the fear of Tyler's immune-compromised body getting an infection with their desire to give him a chance at living.

"We can't not take him out. Because why are we fighting for his life if he can't live?" Mrs. Sears said.

FOR SUPPORT

The local chapter of Mended Little Hearts, a support group for parents of children with congenital heart defects, meets at T.C. Thompson Children's Hospital every third Thursday at 6 p.m. Call Tammy Sears at 423-240-7846 for details.

TO DONATE

For those interested in helping, the Sears ask that donations be made to the Ronald McDonald House Charities or Mended Little Hearts.

FAST FACT

About 1 in every 100 children, about 40,000 a year, has a congenital heart defect. Four percent to 8 percent of them have hypoplastic left heart syndrome, according to the American Heart Association.

WHAT IS HYPOPLASTIC LEFT HEART SYNDROME?

Children born with this heart defect have a heart with a left side that is critically underdeveloped, meaning the heart can't effectively pump blood to the body. The right side of the heart, which typically pumps blood to the lungs where it is oxygenated, must also do the work of the left side in pumping blood to the body. Without surgery the condition would typically be fatal within a few days of life.

It is treated by a heart transplant or a multi-stage surgery. The first stage of surgery rebuilds the aorta and maintains a hole between the two chambers of the heart, which is present in the womb but closes shortly after birth, allowing the right side of the heart to do the work of the left side until other surgeries. Subsequent surgeries reconfigure the blood vessels to allow blood to flow passively to the lungs, like a waterfall, since the left side of the heart still cannot pump the blood actively.

SOURCE: Mayo Clinic, Dr. David Bichell

Staff Photo by Danielle Moore Tammy Sears spends time with her son Tyler Sears, 3, at their home in Decatur, Tenn., a week before his sixth open-heart surgery at Monroe Carell Jr. Children's Hospital at Vanderbilt. Tyler was born with a congenital heart defect called hypoplastic left heart syndrome, a condition characterized by an underdeveloped left ventricle.