Mom to Isla
Born sleeping July 13, 2012
Plymouth, United Kingdom
So our baby girl was born forever sleeping on Friday 13th July 2012 at 23.52, weighing 2lb 1oz. She was so beautiful and we named her Isla, a beautiful name.
Briefly – We went to hospital about ten pm on Wednesday 11th July after getting worried about reduced movements and lack of weeing. Tried to listen to heartbeat but nothing. Did scan and no hb. Between Tuesday (when had mw appt and heard hb) and and Wednesday our little girl died. She was 26 weeks that Thursday.
She touched our lives so deeply and both myself and my husband realised the true extent of parental love. We found peace in Isla and felt unbounded pride and love when we looked at her and held her close.
We buried her in a woodland ground on Monday 30th July. We have chosen a crab apple tree to mark her grave and will plant wild flowers throughout the year. As Isla didn’t get to grow up herself, we are placing her somewhere she can be part of life, growth and beauty.
They say there is a reason, They say that time will heal, But neither time nor reason, Will change the way I feel, For no-one knows the heartache, That lies behind our smiles, No-one knows how many times, We have broken down and cried, We want to tell you something, So there won’t be any doubt, You’re so wonderful to think of, But so hard to be without.
We are now starting to find out possible answers as to Isla’s death. There are 2 parts to what happened in the longer version of our story -
1. She died of hydrops fatalis, most likely 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 susceptible 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, non-immune). 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 I strongly believe it could have all been prevented.
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? Could it be mirror-syndrome? Are they linked or was I going to get ill anyway?
At my 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 – I had 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 – 90 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 symptoms, 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. I was 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 after induction. Have to say, the staff at the hospital were amazing.
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.
You can contact Sara at firstname.lastname@example.org.