I'm now 5 weeks pregnant. The last 3 weeks have crept along very slowly but the best I can do is keep telling myself time will pass. I found out another friend is pregnant so that will be exciting - that's two people I can share this journey with. I loved sharing Luca's pregnancy with my friends who were also pregnant but afterwards it was one of the very most difficult parts of his loss - they all went on to take home their healthy babies and it still reminds me almost every day that I don't have mine. It is some consolation being able to share this next journey with people who I would not have shared a pregnancy with.
Today I went to visit a friend with a new baby in hospital for the first time since Luca died. It was at Frances Perry, so I had to go to the Women's to visit. It was pretty hard. She had a room full of excited visitors and I had to pretend I was ok in front of all of them. There was all that we missed out on - obviously a beautiful living baby, breastfeeding, the Child health record, flowers, congratulations cards, gifts, joyful friends and relatives, beaming parents, exclamations of 'well done - I knew you could do it', talk of first poos, going home, plans for the future. Just when I was managing well one of her friends arrived with her 7 month old daughter. I'm meant to have a 7 month old son so it was hard to sit right next to this gorgeous little thing who was smiling and reaching out her hands, and her mum who was obviously besottled. Then the talk about how well she was doing, how much fun she was. And worst of all I couldn't say anything about my loss as I didn't know most people there - I felt so alone.
My grief counsellor gave me some homework so I thought I'd do it here. We were talking about the very strong guilt I still feel. It has gotten worse since I've been pregnant, and once again I've been lying awake for hours at night thinking things over. He said that I'm my own judge and the prosecution has made its case but the defense hasn't been heard so here goes...
For the Prosecution
- I didn't do anything when I felt Luca move less in the days before he died, even though I'd been told at two appointments to report any lack of movement.
- I was in the hospital the day before he died getting a blood test and I thought about going to ED to get him checked but I had Eliana with me and I decided not to make a fuss.
- I didn't ask to be put on the urso. I didn't want to make a fuss.
- I asked to switch from obstetrician care to midwife care so that I wouldn't get into work at midday every time I had an appointment. I put my work (or what my boss thought of me) before my baby.
- I should have called to check my bile acid results.
- I am too laid back and didn't take the cholestasis seriously enough.
- I knew all about the cholestasis, having had it with Eliana.
- After Eliana's birth I saw a gastroenterologist and a hepatologist. They told me that if it happened in another pregnancy I should take urso, but I still didn't ask for it.
- I failed the glucose test but when I got the letter with the result I phoned up and cancelled the follow up test because it was on a work day and I'd only failed by a tiny amount. I later rebooked it but it meant I was diagnosed weeks later. If I had been diagnosed earlier (ie hadn't cancelled the test) I would have been under high risk care and would probably have gotten the treatment I should have for the cholestasis.
For the Defence
- I thought Luca's movements were slowing down because he was getting ready to be born. The day he stopped moving I didn't want to wake Steve and Eliana up in the middle of the night to do anything about it.
- I hoped he would be ok.
- I was tired from the itching after I got the cholestasis, living on only a few hours sleep a night.
- Steve wasn't helping around the house towards the end of last year despite my pleading, and I was doing two subjects for my masters and working. I was just beside myself. He also took no role in the antenatal decisions (or lack of decisions) that I made.
- I had the guidelines for obstetric cholestasis from the prestigious UK Royal College of Obstetricians and they say that none of the drugs are effective in treating cholestasis. I didn't realise that that's not true and that they do prescribe urso in the UK.
- Babies don't usually die from cholestasis before 37 weeks. The physician I saw was talking about my being induced in week 35 and I thought that would be enough. Luca died too soon.
- The physician and midwives I saw after being diagnosed should have referred me to an obstetrician and put me on the urso. The physician told me he was going to talk to an obstetrician about my case to come up with a plan but no one can tell me whether that happened.
- Someone should have called me when my bile acids were 154 (normal is under 23, above 40 is considered severe and very likely to harm the baby).
- I didn't call that night because I thought they took longer to come back. The next day Luca died and it was too late.
- I had a couple of experiences earlier on in my antenatal care that put me off making a fuss. The first was when I tried to refuse the HIV test and the midwife went and got an obstetrician who signed the form for me to have it anyway even though I was still saying I didn't want it. The second was when I asked for baseline LFTs at 17 weeks - the midwife went and asked an obstetrician and then said they couldn't do it - it wasn't in the guidelines.
- That also gave me the impression that there were guidelines. I later found out there were none. I was putting my confidence in the staff following guidelines that didn't exist.
- I just didn't think my baby would die.
- I had the cholestasis with Eliana and she was ok.
- I loved Luca and would have loved him even more as I got to know him. I would have done anything to stop him from dying if I'd known. I would have done all the things I wish I had done, and more.
- I am a good mother to Eliana. Even though I feel like a failure and a bad mum, there is no evidence that this is true for my living child.
- I rang a funeral director and organised his funeral.
- I phoned my friends and relatives to let them know he died.
- I spoke at his funeral.
- I have grieved, and continue to grieve deeply for him.
- I love to talk about him.
No comments:
Post a Comment