Due 28th July, our amazing little miracle rainbow.
A complete surprise so soon after our beautiful Isla and a very nervous journey so far. But we are of course excited. Every day that passes and I still hear the wonderful sound of that little heartbeat (I have a home doppler to keep me sane!), I get more and more excited about this blessing.
We're not actually being monitored more closely really as they consider me low risk. However, I have my own midwife who will see me right through to the birth and also a consultant on the end of the phone who I've met twice so far and the next time will be at 19 weeks. He basically said that he doesn't believe I got pre-eclampsia at 26 weeks for pre-eclampsia's sake. As I suspected, he said it was Maternal Mirror Syndrome, meaning I was mirroring what was wrong with Isla - the bloating basically - which, in me, manifested as pre-eclampsia. I was very poorly and could have died just like she did. Scary but means I'm not actually 'high-risk' this time. Obviously I can't catch parvovirus b19 again (slapped cheek) but there's still an epidemic of it going on, so I've had my bloods checked again to ensure I was really immune. My midwife is part of a team called the Jubilee Team. I refused to go back to the same children's centre as before, where those 2 midwifes are who I hold responsible for Isla's death are, so get to choose a different centre for my antenatal classes etc. She's always on the end of the phone for a call or text.
I had lots of bleeding in early pregnancy and therefore lots of scans, but everything has settled. After the picture above was taken at 13 weeks, I now have to wait until 4th March for my 19 week scan, when I will also meet with the consultant again. He advised me to use the doppler to check on the heartbeat when I felt worried. I do it every couple of days and it's such a wonderful sound! Currently beating at about 160bpm so, according to the old wive's tale, still in girl territory! I can't wait to find out for sure!
Tomorrow I am 15 weeks pregnant. At Christmas, Dan and I were given the original canvas of the Mewstone Rainbow painting by my friend Toby Ray. I mentioned it during my October project and again since I think. And my mum and step-dad got us an original one made up! It's not hanging on our wall yet as we're trying to move house still, but it will certainly have pride of place when we do! So lovely to have a representation of both Dad and Isla in a very special piece of art.
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.
I don't know how I'm feeling at the moment but this week has been a funny one. I've been up with mum and step-dad in Newcastle. I've had fun, eaten lots and remembered Isla tons. Some points to note from this week include:
- I had a 'heated debate' with my sister this week which I found hard work and very draining. It's consumed too many of my thoughts recently so I am hoping to move on from it now.
- Am able to talk openly to my mum about Isla which is really good. She lost her grand-daughter and has been hurting too so it's someone else feeling similar pain to me.
- Was missing Dan a great deal this week - he was working in Oxford. It was so lovely when he came up on Friday and met us at the house in Yorkshire. It highlighted how needy I feel at the moment. So insecure in myself and how much I lack confidence.
- I wrote on a forum I've been on for a long time (an infertility treatment one) that I hated my body because it killed Isla. That is very much true. I literally, physically punch myself in the stomach sometimes because it is empty when it should be very much full. I didn't manage to do the job I was commissioned to do - protect, grow and nurture my baby girl. What a failure have I been. These thoughts haunt me.
- It struck me this week that the thought of lying to my midwife that there was an actual case of Parvovirus in my school had crossed my mind at 16 weeks. But at the time, I "couldn't be bothered". What a terrifying realisation, that if I had been bothered to go through fortnightly tests and scans, they would have picked up on my non-immunity and then kept monitoring me, thereby picking up on the hydrops and she would still be here. I would most probably still have my baby girl.
- I have started having a very physical reaction to thinking about all things Isla and pregnancy. Speaking to mum has made me realise I think it's a sort of panic attack. I feel a wash of nausea, lack of breath and faintness coming over me when I think about Isla, when I think about the happiness of being pregnant finally and when I think about a future without my precious girl. It's something I think I will need to keep an eye on and maybe go to the doctors about.
- Related to the above, I have started looking into counselling at the Plymouth Pregnancy Crisis Centre. I know they do a course for those facing pregnancy loss called 'The Journey' and I will look into that when I get back to Plymouth.
On a different note, we have found a house we think we'd love to rent so are keeping our fingers tightly crossed that it doesn't 'go' by Wednesday when we're booked to view it. We're not exactly feeling like the universe is 'with us' at the moment, so aren't getting our hopes up too high, but here's hoping!
