Born at 22 weeks and five days, Matt spent more than five months in the Neonatal Intensive Care Unit (NICU) at Riley Hospital for Children. When Matt’s mom, Amy, went into labor just after the start of her 22nd week, his parents were told that their son had little chance of survival. Amy recalls one doctor saying, “We don’t really, at this point in time, have enough data to give you reliable statistics, but if I had to guess, it’s definitely less than a 10% chance of survival. If he does survive, then only a third of those children live what you would call a normal life.”
“We decided that we would look to Matt, and it’s kind of been a theme ever since,” says Amy.
At 22 weeks, a baby’s skin is still translucent, the eyes are still fused shut, and the ears are just flaps of skin because the cartilage has not yet developed. At this stage of development, babies are not supposed to be able to cry, but when Matt was born, he announced his entrance into the world with a cry that could be heard all the way down the hall.
Amazingly, at one pound, eight ounces, Matt was actually large for his age, all things considered. This size gave him a fighting chance. During Matt’s 5.5 months in the NICU, his care team involved the Kinser family on every decision, building on the principles of Patient- and Family-Centered Care that are at the heart of our approach to compassionate care. “What was really phenomenal about the doctors, in my opinion, was the way that they included us in our son’s care,” says Amy.
Not only did they tackle challenges such as which treatment options to choose, the Kinsers also faced challenges presented by Matt’s small size. Matt’s dad, Eric, was worried that Matt wasn’t able to wear clothes—everything was too small for his tiny body. Even the hats knitted especially for preemie babies by hospital volunteers were too big for him. Matt’s nurses understood that it’s sometimes easier to worry about something small instead of worrying about everything else going on. So they made Matt his first clothes out of felt, complete with buttons drawn in marker. The Kinsers were touched when they saw Matt’s new suit.
“It was just so cute. But that was a daily occurrence. That’s not the one thing that happened there. I could go on for a long time about all of the wonderful things that happened on a day-to-day basis.”
Now eight years old and in the second grade, Matt plays with his younger brother and friends just like any other little boy. He plays basketball in a league, loves gym class, and has a great time in school. There are only a few reminders of his prematurity; he wears bilateral hearing aids, necessary because of some of the life-saving medication that he received to fight infection, and he’s working on his fine motor skills. But you don’t notice these things. When you meet Matt, all you see is his bright smile. You would never suspect that he spent his first months fighting for his life.