He’s Not Heavy, He’s My Brother

The birth of twins makes a miraculous event twice as wonderful—and twice as scary for parents. They worry whether everything will be okay, whether they'll be prepared and able to handle the added responsibilities. When Theresa and Roger Barrette's twins were born six weeks early, they felt they were ready.

The hospital where the twins were born didn't detect anything major was wrong before sending them home. But compared to Kimberly, Christopher couldn't feed right. He stopped breathing several times. He screamed all day and night.

Faced with a choice of where to find answers, Theresa and Roger opted to come to Children’s Wisconsin, even though they lived in Illinois. Through Theresa's work as a paralegal, she had been impressed with the medical staff from Children's when they served as expert witnesses. "Everyone was just incredible," she said. "This was our child and we wanted him in the best hands, so we chose Children's."

Christopher stopped breathing numerous times during that long ride to Children’s Wisconsin, but each time the transport team stabilized him. "As a parent, nothing can prepare you for going through those double doors into the emergency room with your child, but having the staff there waiting and knowing what to do was such a relief," Theresa said.

It turned out that on top of a very rare genetic disorder, Christopher had a rare bleeding disorder. Over the next few years, Theresa and Christopher spent many weeks at Children's, where Christopher battled pain, uncontrolled bleeding, pneumonia and seizures. Easily overstimulated because of the "mis-wiring" of his nervous system, it was difficult to soothe Christopher.

The hospital's medical specialists and nursing staff were always there for Christopher. They helped him throughout his short 2 years and 8 months of life. They also taught the family how to let go when it was time, Theresa said. "The palliative care team made the difference in learning to accept that our child had a terminal illness, to be able to grieve for him even before he left and to have a safe place to go to when things got overwhelming," she said.

Christopher died at the family's Florida home, with his parents and his twin sister there to support his journey "home." Children's palliative care team was there emotionally, every step of the way. "They held our hands through all the miles that separated us and worked closely with the hospice team we had down there," Theresa said. "I don't know anybody else who would do that."

Kimberly, now 7, has the same bleeding disorder as Christopher, and receives treatment for it at Children’s Wisconsin. She doesn't, however, face the other genetic challenges that Christopher battled. "One thing I learned," Theresa said, "is that there is absolutely nothing I can't handle as a parent as long as I'm aware of it and educated about it. Children's gave me the resources I needed and suggestions for how to deal with it."

The family will always grieve for the loss of Christopher, yet they are grateful for the way Children's helped them along their difficult journey. In Christopher's honor, the Barrettes created a fund to enhance education in palliative care. "We want to pay tribute to the men and women who choose palliative care, those who are in the trenches with the families," Theresa said. "As parents, that's how Roger and I get up every day—we know our son came here with a purpose and this is where his legacy lies." The Barrettes have also included Children’s Wisconsin in their estate plans. "Children’s Wisconsin treated us like family, and we consider them to be no different than a child or a parent. So even after we're gone, we know all of our family will be taken care of," Theresa said.

Christopher was not expected to live to his first birthday, eat on his own, talk or walk, yet he did all those things before he died. "There was not one milestone we did not celebrate," Theresa said. "He lived every moment and we are grateful for every day we had with him."