Thursday, 9 August 2012

Angry at lack of care... Good to vent!

So we are starting to find out possible answers as to Isla's death. There are 2 parts to the mistakes I believe were made with her and with me, and I don't know who to address with these concerns (at a later date, when I'm more 'together' obviously):

1. She died of hydrops fatalis, most likely (yet to be confirmed by post mortem) caused by me catching Parvovirus b19 between 4 and 6 weeks before she died. At 16 weeks (I know the exact date as I called about a nosebleed that day too) I had called and told my midwife I was very concerned that, as a primary teacher, I would be succeptable to catching it. The wife of a colleague had told me about it as she had lost a baby at 16 weeks to parvo (she was also a teacher, nonimmune). The midwife assured me that most people had it as a child and are now immune and that as a teacher I had *probably* already had it. And besides, they can't do anything if I get it anyway. I was stupidly reassured and didn't push for an immunity test any further. 

If she had tested, we would have found that I was not immune and I could have been more diligent and certainly when I got ill myself later in the pregnancy I could have flagged up my non-immunity and been more closely monitored. 

If they had monitored me and found the hydrops in time, Isla would have had a 80-odd% chance of survival as they could have given her a transfusion, which has huge success rates. 

This virus killed my baby girl at 26 weeks and my midwife could have taken steps to prevent that, had she not been so dismissive of my concerns and made a wrong assumption about an incredibly dangerous disease.

I can't stop thinking about it. If only, if only, if only.... But I can't believe they reassure people so easily over the phone when surely they could just as easily give me the simple blood test???

This is going to be something I really need to get behind - campaign trail here I come. 

2. The early-onset Pre-eclampsia... Was I going to get pre-eclampsia at 26 weeks anyway or was it initiated by the above illness in Isla? Are they linked or was I going to get ill anyway?

At 23 week appointment with a different midwife, I had a list of ailments with me, that she brushed off, didn't record in my notes and, stupidly, reassured me about again. I went with:

~ Very rapid weight gain (had gained over a stone in 10 days!)
~ Bloated fingers and hands - already taken rings off at 22/23 weeks
~ Urination was not very 'forthcoming' - dribbling and tiny streams at best
~ Very solid, uncomfortable bump
~ Not feeling baby as much (was told I didn't need to be feeling regular movements this 'early' on)

I had a little protein in my urine but my BP was 'fine' - diastolic was about 80 I think.

She put it all down to pregnancy weirdness. 

At 25+5 (Tuesday) I called my regular midwife as my feet were in agony as they were so bloated. Saw her later that day.

And that's not even the worst they looked! The toes were almost folded under by Tuesday/Wednesday. 

~ I mentioned also that I still wasn't urinating. I had no protein in my urine though. 
~ My bump measured 3cm too large. I mentioned again that I'd put on now 1.5 stones in 2 weeks which seemed excessive when I'd kept weight gain to a minimum until then. 
~ My BP was slightly raised - 85 diastolic I think, maybe more
~ Baby's heartbeat was 140bpm (always been in the 150s before when scanned - also used home doppler and it's been in the 150s always) - was told it can slow down and speed up as normal
~ Fingers and feet clearly very swollen - she said they weren't the worst she'd seen
~ Very reduced movements - had felt maybe 1 kick in the ribs since yesterday by this point. Was told my bladder was probably in the way or she was facing my back and I couldn't feel her.

She seemed slightly concerned so phoned the labour ward at the hospital for second opinion. They said I had little bits of lots of symptons, but not enough to warrant further investigation or monitoring. She said my bladder was probably too full and making me uncomfortable, but couldn't explain why this would be. 

I accepted that this was my lot. I was just going to have an uncomfortable 14 weeks for the rest of my pregnancy but so long as Isla was okay,  I could live with that.


By the next day my feet were huge and in agony, I was hobbling around but still convinced she was ok.  Still not weeing either.

I went home at lunchtime and used my AngelSounds doppler to listen in. I found a heartbeat of 120bpm and thought I must have counted wrong. So I downloaded a timer APP on my phone but then the battery died. I left it to charge while I went for dinner. Came back later on and there was no sound at all, not even the whooshing sounds we'd heard since 13 weeks. I tried for 45 minutes and then called Dan, who tried for a further 30 minutes. We were convinced my full bladder was just in the way or she was facing backwards, as the midwife had said. Dan asked me what would make me feel a bit better and I said I felt I needed to call someone. 

Called the labour ward, who asked us in for 'reassurance' purposes only. They couldn't find a HB but stuck with the full bladder theory. So we drained my bladder with a catheter and they only got 10ml out. I was still in agony when the consultant came and did the ultrasound that gave us the heartbreaking news. 

They only realised it was full-blown pre-eclampsia when I was in labour a couple days later. Have to say, the staff at the hospital were amazing. 

Funnily enough, haven't heard off my assigned midwife since I vented at the 23 weeks midwife when she visited post-birth about what probably caused Isla's death. 


So 2 events - the hydrops that killed Isla and then the pre-eclampsia that almost killed me. Are they linked? Could they have been prevented? 

I believe so. I believe I self-diagnosed myself better than the professionals and if they'd listened to me, I would maybe have Isla still inside me now. 

This whole story has so many aspects, I don't even know where to start to focus to be honest. 

1 comment:

  1. I have many, many, many issues with how my pregnancy was monitored. I questioned so many things but I "listened" to my OB when I should have listened to myself. There is nothing that we can do to change how we were cared for and that will eat away at so many of us for the rest of our lives. What I do know is that it helps to talk about it, I wrote my OB a VERY long letter recounting every question I had. I never did hear back from her but-I said everything that I needed to. It was a good feeling the day I placed it in the mailbox, knowing that she would read exactly how I felt. Maybe that would bring you a sense of "relief" even if you aren't ready to mail it, you could keep it until the day you are. Thinking of you and your Isla.