Making Decisions About Very Premature Infants: Personal Stories

Topic Overview

These stories are based on information gathered from doctors and consumers. They may be helpful as you make important health decisions.

Jeremy, age 28: My wife and I have had a tough time since our second child, Caleb, was born at 25 weeks. We've always trusted our doctors to know what's best. We told our neonatologist that we had faith that Caleb would pull through and that we wanted him to do everything he could to help Caleb survive. What we didn't expect was that Caleb would have so many ups and downs. He had one infection after another and had to be on a ventilator on high settings for quite a while. After he had a grade IV brain bleed, we learned that part of his brain was damaged. He came home on oxygen and six different medicines. We were thrilled when he weaned off of the oxygen just before his first birthday! Frankly, with both of us having to work, keeping up with Caleb's weekly physical therapy, speech therapy, and other medical appointments has been hard for us and his sister. And our lifestyle has changed a bit since his mobility is limited and he's getting bigger. Caleb has been doing better than we expected, though, and we're so grateful for that. We hear it's really made a difference that he's had lots of attention and love from his family, therapists, and teachers.

Karen and Joe, ages 40: When I was in preterm labor at 22 weeks, the neonatologist visited us in my hospital room. She warned us that most babies this age don't survive the birth, and that survivors have a high rate of disability. I had been ill during my pregnancy, and none of us felt that the odds were in favor of this baby surviving without serious complications. Joe and I were faced with the most heart-wrenching decision of our lives and decided against resuscitation. After our daughter was born, we held her and said good-bye.

Melissa, age 35, and Mauricio, age 33: We've always felt like we could control the important events in our lives. Having our daughter Anna arrive at 24 weeks really threw us for a loop. First, we felt totally helpless. We knew nothing about what a 24-weeker might be up against. We were lucky to have a doctor who kept us informed every step of the way, who also wanted to give us as much control as possible. First, we thought that we'd just let nature take its course, because there are some things that you can't force. She simply looked too tiny and fragile to survive. But then, we learned that as long as she was on basic life support, she was actually doing well. We were impressed by her fighting spirit. Based on what her doctor told us, we decided that we'd do anything to help her survive. That might have been different if her brain bleed had been really bad. During the 11 weeks Anna was in the hospital, a few other babies didn't make it. We'll never know why she did so well while they didn't.

Jayna, age 18: I'm a single mom, and my twin boys were born at 28 weeks. They were really small and sick, and I was totally overwhelmed. My mom helped me out as much as she could, but she didn't know what kind of advice to give me. So, I really depended on the NICU doctor and nurses to take care of my babies and tell me the best decisions to make. I really trusted them, and I'm glad I did.