Hi everyone
I recognise many names from the "old" forum and hello to the new names! I posted quite frequently on the old APEC forum but haven't had much of a chance recently to get organised and get over here, but have finally made it! It's great to see the forum is so active- thank you so much Liz
Well for those who don't know, I'm Annika, and I've had PE twice
Back in 2005 when I was 29 weeks pregnant with my first child I had been having a text book perfect pregnancy when I started to develop severe tummy pain, which at first I thought was bad heart burn. I'd been feeling generally unwell but put it down to a bad cold- however this pain was new to me and worried me a little. I was sadly completely ignorant about PE other than the usual high BP & protein in urine symptoms- but really thought that if it struck it was later on in pregnancy... So it never crossed my mind this was the cause of my pain. To cut a long story short, the pain became so debilitating over the course of a couple of days that at 4am one night my husband decided A&E was called for. There the doctors thought at first I had a urinary tract infection and gave me strong painkillers plus antibiotics. Then they thought perhaps I had gall stones, so I was admitted to a general surgery ward for more investigation. They couldn't find gallstones so I was sent home later the next day with painkillers and told that if the pain worsened to come back.
2 days later the pain was again excruciating and making me vomit, so we traipsed back to A&E. This time a different doctor saw me and took blood samples immediately- these he compared to the set I'd had done 3 days ago and found a huge drop in my platelets and my liver function was completely awry. Luckily they quickly booted me over to maternity where an hour later HELLP syndrome was diagnosed (after at first thinking I may have had obstetric cholestasis). By then I was hyper-reflexive and although I didn't realise at the time how significant that was the doctors advised that the baby should be delivered as soon as possible. Two short hours later Sam was born, at 30+4 weeks, by emergency c-section. He weighed exactly 3lbs, and thankfully came out crying much to my relief! He was rushed to NICU but avoided a ventilator amazingly and was stabilised on CPAP. Meanwhile I became very poorly and was not moved from delivery suite for 48hrs while I was stabilised. Thankfully after that I recovered quickly and Sam was home some 8 weeks later, after a bumpy but also lucky ride through SCBU. He is now a very active, happy 3 year old who constantly makes me laugh (we are so fortunate).
We had always wanted more children so after much deliberation and seeking support from Liz we met an APEC medical expert to discuss the likelihood of PE reoccurring and how a future pregnancy could be managed. We went for it again and I fell pregnant very quickly, and was started immediately on low dose aspirin. My care was transferred from our fairly small local hospital to the main hospital in Belfast (when Sam had been born) and a wonderful consultant saw me every 2 weeks from 20 weeks. The baby was doing great and doppler scans showed excellent blood flow. We had a brief worry around 27 weeks when the baby's growth slowed but the doppler scans still showed good blood flow so with increased BP etc. monitoring we carried on. Unfortunately from about 33 weeks my BP started to creep up, sometimes falling back again but by 35 weeks it wouldn't go below a diastolic pressure of 90 (I started pregnancy with diastolic at 65 or 70, where it remained right up to 32ish weeks). I was reluctantly admitted, missing my son awfully, and BP meds started.
In spite of the meds, my BP kept creeping up and I started to get a lot of visual disturbances and headaches (I hadn't had these in my previous pregnancy). On the plus side there was still no protein in my urine and my blood tests showed everything to be ok. I had hoped so much for a VBAC and to make it to term but sadly at 36 weeks my consultant decided she didn't like the look of how my BP was behaving, and knowing how rapidly I'd deteriorated with Sam decided it best to get my little one out. Mairi was born at 36+2 days, after antenatal lung-maturing steroids, by c-section weighing in at 5lb 8oz. She did great to start with and we had a precious couple of hours together, but then she started to get "grunty" and needed some assistance, so was moved to SCBU. She spent a week there and we finally established breastfeeding and came home together! I felt this pregnancy was a far greater success, and although it was sad (hmm, that's putting it mildly) to have another pregnancy finish with PE, I was so grateful to have got so far along.
Sadly Mairi has cystic fibrosis (CF), which was diagnosed at 7 weeks old, so that has changed our lives greatly. She turned one on Thursday past though and is doing really well- she's an absolute joy and now learning to walk!
I still have a deep yearning for a full-length, PE-free pregnancy, and realise that will probably never go away. We had always wanted 3 children but obviously if we do try for another there are a lot of issues to resolve. However, we have decided to have a meeting with my lovely obstetric consultant in a couple of months just to talk through our options... When Mairi was born my consultant at the time was very positive that I may have that shot at a PE-free pregnancy, or that we'd get to at least 36 weeks again...but of course now the risk of CF complicates things too. I still have a lot of unresolved issues, I find it hard knowing PE struck twice but they still don't know why I get it- I'm pretty young, average weight, no previous BP issues etc, and the usual blood clotting disorder etc. tests came back clear.
Anyhow, I always aim to post succinctly but I am just incapable of it- so many apologies for the looooong message!
Love to you all, so many of you have been through such unbearable things- my heart goes out to you,
Annika xxx