Newborn Screening Experiences

Amanda • 💙(2/2017); 🎀(10/2018)

Hi all, I'm pregnant with #2 (a little girl) and due on 10/31.

My question is for all you mamas who have had babies before and what your newborn screening experiences were like at your hospital. At our hospital they do all screening in the nursery which has a window. When my son was born we initially stayed to watch but later went back to my room because I had a lot of pain from my tearing. During the time we were back in my room my son apparently failed his CCHD 4 times and then was brought to our hospitals level II-B NICU/SCN where he was tested again, failed and admitted. During that time no one ever came by to update us or tell us where he was and we knew he was no longer in the nursery. It was over an hour before they finally told us but initially just lied and said they were having difficulty with his heal stick. He was later diagnosed with PPHN and spent 11 days in the NICU.

As a result of a lot of this I developed POOCD and really struggled letting anyone near my son and with leaving the house because I was so worried about harm coming to him or someone taking him again without telling me where he was. My husband and I filed a 15 page grievance and the hospital has made some changes but typically still requires all testing to be done in the well baby nursery. We connected with our patient care advocate and she spoke with the head of the mother baby unit. They've assured us that when the time comes they will make every effort to accommodate screening our little girl in our room. But my husband and I have also discussed refusing screening if they will not do it where we can physically be with our daughter because while we truly believe it is important we do not want them taking our baby without telling us again. But that comes with the fear that they would file with DCF based on medical neglect or something...

Did your hospital allow screening done with you? If you refused screening, what was their protocol?