My newborn DD2 was admitted to Paediatric ICU 3 weeks ago with suspected strep B / meningitis. She'd not been right since her birth and stopped feeding completely so we were blue-lighted to our local hospital and then transferred to a more specialist one from there. We were told not to expect her to survive the night. That night I fell ill myself and was admitted myself and put on IV antibiotics. My DD had bloods cultured and after a couple of days we were told it was Enterovirus - something I have never heard of.
I will try to cut a very long story short: Over the past 4 weeks she has had a lumbar puncture, a muscle biopsy for suspected mitochondrial disorder (which seems to have largely now been ruled out but the results of the biopsy will take 6 weeks so who knows), 5 days on a heart bypass (ECMO) machine, and god knows how many drugs going into her. She has been fully sedated for the most part and fully ventilated. When she started waking up she crashed and had to be sedated again. Her heart has taken a huge whack and she has myocarditis and a faulty mitral valve, all caused by the virus. They won't operate til she is 2mo. She may or may not be brain damaged as there are some anomalies on the scan, and she is going for an MRI in a few days.
All her levels are returning to normal and they will start slowly rousing her tomorrow, I have no idea how she will cope with this but she has been sedated and ventilated for so long that everyone is getting twitchy.
The last 4 weeks have been a devastating emotional roller coaster and not over by a long shot - assuming she survives we are looking at months in hospital and who knows what the prognosis is.
Does anyone have any experience of this virus? Or even a similar experience to us (and for your sake I sincerely hope not)? I just have no idea where it could have come from and I'm torturing myself that I could've done more for her or avoided it somehow.
The precursor to all this was a crash CS at 37wks after I got excruciating abdominal pains and both our heart rates were off the scale, so part of me wonders if its something I had prior to her birth if its even possible to have a virus and not know it? I do not know if the illness I came down with the morning after she was admitted to ICU is the same as what she had or if all those things are coincidental. I have a toddler who has been well but had HFMD in March - I don't know if that's too far back for it to be related but I assume so. I know HFMD is related to Enterovirus somehow.
I cannot believe this has happened and I'm just looking for answers I may never get, but it's worth a shot to see if anyone else has had experience.
(I have NC'ed as I think this story is so specific that it would be obvious who I am, if you knew me in real life)