TABLE 6

Qualitative Themes and Illustrative Statements

ThemeIllustrative Statement
Mothers experience distress in the early days
 The news is distressingJust as you think everything is going so perfectly, you hear this… it is so scary; you always think it happens to other people... (205)
I just shut down. I didn’t hear anything. She kept talking and I could tell she was trying to calm me down, but I couldn’t hear anything she was saying. (015)
Well, I guess it kind of blew me out of the water…we signed the form in the hospital… but didn’t know anything really about it, so forgot about it. So, when the call came it knocked me on my butt... (050)
 The news triggers symptom monitoringAll I kept saying was “she’s got cystic fibrosis. That’s why...” She was really congested… I said, “oh my god, this is why she’s this. This is why this happened. This is why she keeps throwing up when she eats.” (015)
No, we just spent the 2 days looking up symptoms, trying to find reasons that would explain... his behavior because he was eating a lot.... had raspy breath. So, I thought, oh my god, those are symptoms. We licked him. And then, I swaddled him up and made him sweat some and licked him more… (052)
But you worry… you start to think of every little cough… she tends to drink a lot of milk, chugs it and then spurts it all up and, you know, is that her drowning in mucus cause she can’t drink it properly? Your brain just goes. (234)
 The news leads to fearing a life of chronic illnessBut you know, my husband was sitting there in the waiting room, nervous and, and looking at all these other poor children that are there for different reasons, you know, are really, really sick and, and you start to really think about, this could be my reality (173)
As soon as I got there it was even more stressful because I was, like, “oh my god, I’m going to be coming here for the rest of my life”…. it was really stressful… I walked in there and I’m seeing other kids with, like... I don’t know what you call those long stick things with, like, the drippies on them. And, I’m, like, “oh god, I’m going to... that’s going to be my kid” (017)
Really it was just fear, but it was fear for different people as well. Like, it wasn’t just a fear for her. It was a fear for my older son and if she suddenly had a condition that required a lot of specialists and doctor’s appointments, what did that mean for him and our family? (141)
The system response helps to mitigate the distress that is experienced
 It was quick and prescribedWas great that we didn’t have to wait because…waiting like 2 or 3 weeks for an appointment... You would have just made yourself sick with worry…48 hours is long enough… if you had to wait like 2 weeks, then you know, you really get your anxiety level up... [173]
So I was thrilled with that approach…...to have her just tell us, “show up at this time”... we didn’t have to do anything. So that eliminated a whole other set of questions in what do we do now and who do I call? And, we didn’t have to do any of that. (129)
 Communication was effective and sensitive from notification to confirmationShe had a really, really positive outlook. And, she was really calm. And, you know, I don’t... it wouldn’t have made it any worse or better hearing it from my family doctor or something, or somebody that I knew... You know, the way she presented the information I think made a huge difference even though I didn’t... I’ve never spoken to her before. (153)
You could tell that she just knew what she was doing, very routine. She was comfortable with babies. Like, she was excited. She was talking to our son. Like, we hadn’t even started talking to our kid. And, it was just a very, like, upbeat feeling. And, she was, like, “yeah, stay in here as long as you need to” and, like, just very warm...and comfortable.” (035)
And, it was certainly my experience that everybody was sensitive... I felt completely supported. And, I felt like for all I knew [she] could have been there only for me; and that’s the way she made you feel. Like, “I’m just here for you and it doesn’t matter; anybody can walk into my office right now. It doesn’t matter. I’m talking to you. And, I think she was great at that. And, I think if your other folks are making a... are like her, I don’t think you have a problem. And, I mean, doctors or whoever making that call, as long as parents feel supported and that you care and it’s not a... this is not routine. It may be routine to you; it’s not routine to me. That’s the only thing. (141)
 The role of early information about newborn screening outcomes is unresolvedYou know, if my OB would have sat down with me and spoken to me for 5, 10 minutes about what the results would be and, you know, potential results and what would happen, what the steps would be if this or that happened; yes, the pregnant woman freaks out, but it’s almost... it’s better to be kind of forewarned I think. It gives you time to think about it. I don’t know. Instead of just somebody coming in and, you know, doing the prick test and then 2 weeks later you get a phone call, ta da! (153)
And, I’ve thought a lot about this since. I’m not so sure I would have had it any other way. That’s kind of the problem because you kind of forget about it. But, if nothing was wrong, so say with the second child, I’m not so sure I’d want to be thinking about, you know, a phone call that may come. Of course I will now because I’ve gone through it, but I’m not so sure what the right answers are. At first I thought it would have been nice to be reminded when we left the hospital that those... that screening was being completed, but now that I’ve sat and thought about it I’m not so sure I would have wanted to know that either. So, I would say we were completely shocked. I guess part of the problem too is when we signed that form we didn’t really know what was being tested either. And, you know, we could have looked it up for sure and I’ve since looked it up, but I had no idea what we were even... was the potential to come up. (050)