Having emailed PALs (the Patient Advisory Liaison team) at the hospital about my pregnancy and what happened to Isla, I received a reply from the head of midwifery.
I met with her the very next day (last Tuesday) and went fully loaded with research documents, medical journals, graphs and statistics, as well as my own record of notes and phone calls made, with dates etc...
She started the meeting by stating her condolences which I gratefully received. She explained that she has already been looking into our case, as they do with all stillbirths, by looking at my (very lengthy!) notes. She had concerns that she'd already broached with the relevant midwives with regards to what she had read in my notes, but she was greatly concerned by what I emailed about with regards to being told 'No' for the parvovirus immunity test.
And then came an immediate shocker - she was appalled to read that I was told 'no', as it is the practice of midwives and GPs in the Trust to give all women in high-risk positions the immunity test. She said that she has looked into what technically constitutes a 'high-risk' person but agreed that a primary school teacher was certainly that. I explained that I had told my midwife my job and explained how worried I was about it, knowing someone who had lost their baby to it. I told her that midwives in some parts of the city were indeed giving the tests to teachers, but that my concerns had been poo-pooed over the phone. I showed her the evidence that showed that 2012 was an epidemic year and that the South West was having its worst epidemic ever. And I showed her the RCOG Alert that was sent to all trusts warning them about the parvovirus epidemic, which she agreed had been seen by staff. She said there is a professional expectation that the staff will keep abreast of such things also, but that they were in fact told to give the tests to those at risk. No questions asked! She said she'll speak to the midwife about this specifically. She was also hugely concerned about the second midwife who commented that she'd not really heard of it before and would need to go back and look it up. She will also be speaking to her about that as that is a problem too.
She said she'd already spoken to my midwife about the events of the day before we lost Isla, when I went to her about my feet and lack of urination. In my notes there is very brief detail. She was shocked (again) to hear that I had specifically mentioned the rapid weight gain, lack of urination and severe bloating at both my 24 week appointment with midwife number 2 as well as the drop-in appointment the day before we lost Isla. She said it should have rung alarm bells on both occasions, certainly about the weight gain and even more seriously about the lack of urination - even a urine infection can be dangerous for a baby. Although she did say that, having sat down with my midwife to go through the events of that appointment, she hadn't mentioned the lack of urination or weight gain (it wasn't written in my brief notes), and they had come to the conclusion that not admitting me was fine. Had she considered the weight gain and lack of urination better and admitted me, who knows. I explained that it seems reassuring at the time to have your worries allayed but in reality, it was dangerously dismissive and had they not been so, they could possibly have saved Isla her life and me the pre-eclampsia.
I am adamant that I don't want other women to be dismissed so easily, certainly over the phone. Midwives need to know more about parvovirus and they should be testing women as standard or at least those in high-risk positions or those that ask for the test. I am sure that had they taken me more seriously, that Isla would still be here and that breaks my heart, it really does. If they'd scanned me when I was in hospital with a bleed at 22 weeks, they may have caught the hydrops, or certainly at 24 weeks they would have. If they'd sent me in for monitoring on the Tuesday, would it have been too late?
She asked if we want to formally complain. I said that 7 weeks ago I'd have been lawyered up and on to the press, but I need to move forward with my life. But then, when I told Dan about the meeting - he has been very non-blaming since the start - he got really angry and thinks someone should pay. She said she'll write everything down in a letter for us when she's talked to the midwives again, and then we can decide whether we want to make a formal complaint or not. She seemed to be ready for me to complain and seemed also to understand why I would want to.
I just need to know it won't happen again and that the midwives won't be so dismissive of concerns or the signs and symptoms of such dangerous things - YES, PRE-ECLAMPSIA CAN HAPPEN THIS EARLY ON! I was showing signs at 24 weeks, possibly a mirror-syndrome of Isla's illness, yet no one took me seriously enough. I need them to have learned a lesson, because I've certainly learned a good few million - never take the reassurances of others, even medical professionals, over your gut instinct. That has cost me my baby girl and the sadness of that will ache in my soul forever and ever.