Heart brokenThree-year-old A.J. Werner knows why there’s a vertical scar running down the center of his chest and the chest of his one-year-old brother, Tyson.
By: Keith Grauman, The Hastings Star-Gazette
Three-year-old A.J. Werner knows why there’s a vertical scar running down the center of his chest and the chest of his one-year-old brother, Tyson.
“He knows why he has ‘owies,’” the boys’ mom, Gina Werner, said. “His heart was broken and they had to go in and fix it. Then when they were done they glued him up.”
A.J. stands in the Werners’ living room and nods in accord as Gina explains the cause of his scar. He pulls Tyson’s shirt up to show his brother’s “owie.”
Hastings residents Jeff and Gina Werner have watched their two sons undergo a combined 11 surgeries in the past four years. Both boys were born with heart defects and the process toward clean bills of health for them has been trying for the family still and continues today.
A.J. was the Werners’ first child, born Jan. 28, 2006. The day after he was born, doctors performed an echo test on his heart and heard an abnormal heart murmur. The Werners were informed the next day that A.J. had a heart condition called Tetralogy of Fallot, a congenital heart defect.
Many family members were at the hospital with the Werners that day. Everyone with the exception of Jeff and Gina was asked to leave the room when doctors broke the bad news to them. Gina said she cried thinking that her son wasn’t going to leave the hospital alive. Once A.J.’s condition was better explained to them by a cardiologist, and they were told of the high success rate of kids who get treated for the condition, they felt better.
For Jeff and Gina, it was a lot of information to absorb in the day or two after their first child was born.
“It was horrible,” Jeff said.
“Yeah, that was a bad day,” Gina said.
At four months old and after postponing it several times, A.J. had open heart surgery to correct his heart condition. During the seven hour procedure, A.J. had to be placed on a heart and lung bypass machine, which essentially stopped his heart from beating on its own. The Werners got updates from doctors about once every hour-and-a-half while they sat in a waiting room.
The procedure was a success, and Jeff and Gina finally got to see A.J. when he was moved to the intensive care unit.
“He is sedated with a lot of lines, tubes, and all sorts of other medical items surrounding him, it looks pretty frightening at first,” Gina wrote in a journal entry on a Caring Bridge website they setup for A.J. “It was difficult for Jeff and I to see him like that but we know he will be getting better everyday from now on.”
Friends and family members followed A.J.’s recovery online through updates posted to his Caring Bridge website. Gina said she resisted starting the site at first, because it felt like a partial acceptance that A.J. might not make it. After having to give the same updates to several people, several times, and crying every time she did it, Gina finally relented and set up the site.
A.J. had some complications in the week following his surgery. He had a seizure and stopped breathing once and had to be put on a respirator. About a week after the surgery, however, the family did get to go home.
The year that followed was filled with a lot of check-ups and other procedures, including having tubes put in A.J.’s ears. After all the time he spent in hospitals and around doctors, Gina said A.J. is an old pro when it comes to check-ups, and knows which doctor’s offices have the better play areas for him.
This year, the Werners discovered A.J. has DiGeorge syndrome, which can weaken the immune system and has caused A.J. to have chronic illnesses. He was taking antibiotics daily for a while but is off them now. He’s been immunized for the flu and H1N1.
It was nine months after A.J. was born before Gina was able to go back to work as paralegal with the Hennepin County Attorney’s Office. Because of his DiGeorge syndrome, it’s not safe for A.J. to be in daycare or any environment where there’s an increased chance of him being exposed to germs. Gina’s co-workers donated their own paid time off to her so she could stay home with A.J., a gift the Werners are very thankful for. Jeff is a Minneapolis police officer, and the department was very flexible with his work schedule, as well.
After going through everything they did with A.J., when Gina got pregnant a second time, they chose to have high-risk prenatal care. Doctors did echo tests on the baby’s heart while he was still in the womb, but never found anything abnormal.
Tyson Werner was born on Mother’s Day, May 11, 2008. Everything seemed fine until he was about four months old and he developed a strange cough and stopped eating.
Jeff and Gina brought him to the hospital several times because of the cough and his lack of interest in food, but doctors weren’t able to pinpoint what was causing the problems.
At about six months old, Tyson was diagnosed with a heart defect sometimes called a vascular ring, in which an artery comes out of the heart on the wrong side and wraps around the esophagus and trachea, making breathing and swallowing difficult. The defect explained Tyson’s aversion to food, but it wasn’t good news by any stretch of the imagination. The defect is extremely rare, which is one reason it took so long for doctors to recognize it, despite Gina’s high-risk prenatal care.
Through some online research, Gina found a doctor in Chicago that specializes in Tyson’s particular defect. In October of this year, after reviewing Tyson’s medical documents, the doctor said Tyson would have to undergo open heart surgery to fix the problem, a procedure he’d only performed twice before in his career. But doing nothing wasn’t an option.
“They said, ‘You don’t have a choice,’” Gina said. “‘There’s no way you can not do this and have him be OK.’”
In November, they took Tyson down to Chicago to see the doctor. They were told Tyson’s airway was 70 percent compressed as a result of the defect.
“According to the ENT (ear, nose and throat doctor) there are some options but he again reiterated this is a ‘major’ surgery,” Gina wrote on Tyson’s Caring Bridge site. “I really wish they wouldn't say that. It terrifies me. This is so hard. I can't imagine what Wednesday will be like for the heart surgery.”
The day of the surgery came. Tyson had to be put on the same heart and lung bypass machine A.J. was on for his surgery. In order to move Tyson’s aorta, which was compressing his esophagus and trachea, doctors also had to cool down his body to prevent brain damage while his heart was stopped.
After several hours, the Werners were informed the surgery was a success. Tyson now has 60 percent of his airway open, and it’s expected to go up to 100 percent in the next year as he heals. He’s still not eating many solid foods, but the Werners are trying to get him more accustomed to them as time goes forward.
By looking at the boys today, you’d never be able to tell how much they’ve endured over the past four years. They’re happy, love playing with their toys and each other, and keep Jeff and Gina busy. The worst of it seems to be behind A.J. and Tyson.
“It’s been a long four years,” Jeff said.
Family, friends and the congregation at Christ Family Church in Hastings are who the Werners credit for getting them through the hard times. Their Caring Bridge entries for both kids usually come to an end with a “thank you” for prayers and help from their family and friends.