Aboveallislove
Super Moderator
Hello all,
I'm putting together an introduction for those new to CF (either new diagnosis or potential diagnosis for unborn or newborns), and wanted to include as many different experiences as possible. Could those of you who received the news through newborn screening share how it all went? (I'll have another thread for those who learned either prenatal or at birth because of MI).
So for us, I got a call from the state newborn screen office a week after DS was born. They didn't have our pediatrician's info and just called for that. After I gave it to them (half asleep) I asked if there were any concerns. They said well just one. I said what and they paused (I can still hear the silence and the ladies hesitant voice) as she said he was presumptively positive for cystic fibrosis. I then called our peds office and told them what they said and asked what it meant and the ped called back that night told me details, while during afternoon the peds office worked to schedule the first possible sweat test, with the peds asking which center we wanted to go to, and checking availability at both. The peds office did the entire scheduling. We got in to the CF Center 4 days later (newborn screen call came on Friday and CF appointment on Tuesday). We also asked for a hard copy of the test results because my brother in law who is a doctor wanted to know if it was hetero or homo.
Could others share as many details as possible re who you first heard from, what they said, who scheduled the appointments, how long it took to hear from newborn office and to get into the CF clinic? I know others who will face this hard time in the future will appreciate the background!!
Thanks!!!
I'm putting together an introduction for those new to CF (either new diagnosis or potential diagnosis for unborn or newborns), and wanted to include as many different experiences as possible. Could those of you who received the news through newborn screening share how it all went? (I'll have another thread for those who learned either prenatal or at birth because of MI).
So for us, I got a call from the state newborn screen office a week after DS was born. They didn't have our pediatrician's info and just called for that. After I gave it to them (half asleep) I asked if there were any concerns. They said well just one. I said what and they paused (I can still hear the silence and the ladies hesitant voice) as she said he was presumptively positive for cystic fibrosis. I then called our peds office and told them what they said and asked what it meant and the ped called back that night told me details, while during afternoon the peds office worked to schedule the first possible sweat test, with the peds asking which center we wanted to go to, and checking availability at both. The peds office did the entire scheduling. We got in to the CF Center 4 days later (newborn screen call came on Friday and CF appointment on Tuesday). We also asked for a hard copy of the test results because my brother in law who is a doctor wanted to know if it was hetero or homo.
Could others share as many details as possible re who you first heard from, what they said, who scheduled the appointments, how long it took to hear from newborn office and to get into the CF clinic? I know others who will face this hard time in the future will appreciate the background!!
Thanks!!!