Part of the reason for that was that we really haven't had any concerns with her hearing all this time, and we didn't want to risk taking her into the hospital during cold/flu season just to have a hearing screen, or the priority of surgery and recovery always knocked out routine hearing screening.
Nevertheless, frequent hearing screening is very important for CDH kids, especially those that have been on ECMO and/or been exposed to ototoxic medications, and long-term mechanical ventilation. Sofie, of course, has all of those major risk factors for hearing loss, and the incidence of progressive, late-onset sensorineural hearing loss in these kids is very high. So even though she seems fine now, she is still at high risk to develop hearing loss throughout her childhood, and should be screened at least yearly all throughout her childhood and into her teen years.
One of the early signs of hearing loss is slow speech development during the infant/toddler years, and Sofie has always been right on track or even ahead in the speech department. We know she can hear us quite well, but that doesn't mean that she couldn't still have some high frequency hearing loss that we just aren't able to notice. For instance, she may not hear the "s" on a plural word or other very high frequency sounds, and we wouldn't be able to tell. Therefore routine screening is really important for her.
We expected her to pass without any problems, but we know the statistics and were still worried that we'd put this off and she might have a problem we didn't know about. Better late than never, I took her in for a hearing screen at Children's Mercy in June. I was worried about how well she'd cooperate, but she did surprisingly well, and the staff were fantastic with her. She passed with flying colors!!
For her screening this time, she was tested in a soundproof booth with speakers on each side that played sounds of varying frequencies. She had to look toward each speaker when a sound was made, so they knew she heard it, and she did that without any problem. She wouldn't keep the headphones on this time, so we'll work on that for her next screening. Until she wears the headphones, they won't be able to test each ear individually, so her result this time was for her overall hearing with both ears together.
We're happy she passed, so that's one less thing to worry about right now. We'll keep you posted on future screenings!