Anyone have experience of arranging an elective pre-term delivery?

[Bibijayne]

THIS IS DUE TO SIGNIFICANT HEALTH CONCERNS FOR MYSELF AND MY BABY

THIS IS LONG, THANKS FOR READING, THANKS FOR ADVICE.

TL;DR Pregnancy complications - main issues affecting liver. In a great deal of pain and distress. Will need to be delivered latest 38 weeks. High risk or premature labour. Cannot cope with constant pain any more. Issues affecting mental health. Want a plan for an early c-section. Want to have steroids to combat early delivery/ higher risk of early labour. Most staff amazing. Sticking point my consultant. Only seen me once, 10 mins this week. Not terrible but no plan - very wait and see. Says to do things which make me worse. Has banned all painkillers unless an inpatient on morphine. Help advocating required ahead of meeting next Tuesday.

33 weeks tomorrow. I've been sick and getting progressively and more seriously sick since week 26.

Since the start of July I have had two 5 night inpatient stays on the obstetric monitoring unit. I am very high risk.

I have gestational diabetes - which is now being managed quite well with Metformin and insulin. This is not the main issue - but does complicate treatment etc.

I have obstetric cholestasis. It was diagnosed about three weeks ago. My levels were just over the diagnosable rates but I was out on Urso.

Things have taken a considerable turn for the worst since then. I was already losing weight - this has accelerated. Now lost around 25lbs since week 24. Now weigh less than when I conceived, though baby is growing well at the 50th percentile. I seem to be consistently losing between 1 and 3lbs a week, despite baby boy gaining as expected in the same time period.

My liver function results are all over the place. My ALTs are currently at their lowest for the last 2 and a 1/2 weeks. They 375 (normal max is 50. Pre and early pregnancy my ALTs were usually around 15).

My bile acids are semi under control with Urso. But they fluctuate between normal and high. They're currently 33. Dependant on your NHS trust max level is 10 or 14 (mine is 14).

I have been getting regular billiary spasms (my liver, gallbladder and surrounding area spasm for about an hour - usually at night or about an hour after food.) For those who've never had these, it's described as a pain up there with kidney stones/ renal collic.

I have buscopan to help reduce their severity. Which helps. But the buscopan seems to counteract one of the other drugs I have which reduces nausea and causes me hours (5+) or heart burn and throwing up bile (green, but sometimes pink as it can end up tinged with blood).

I've had two ultrasounds of my liver and gallbladder. I have also had an MRI. My gallbladder is clear of stones. My pancreas was inflamed on the MRI (you can't see it on ultrasound because the uterus is in the way) the gallbladder looks okay, but my lover is inflamed - especially the bile duct is inflamed. There are no blockages and the proctal vein is clear of thrombosis or blockage.

After umming and ahhing and lots of bloods, the various medical teams have concluded this is just a nasty case of OC and should clear up after I give birth. The surgical team are investigating removing my gallbladder as a precaution though - post birth.

At the moment, as mentioned before my baby is fine. So far nothing nasty has crossed the placenta. It is all whooshing around me. Causing incredible amounts of pain. Because my liver is in such a poor way I can no longer take any painkillers. They did let me have a small amount of codeine when in hospital but this could exacerbate spams.

I am told to take it easy. But the consuktant I'm under (who I've only seen once for less than. 10 minutes... I've seen all the other doctors and consultants far more often) on Tuesday encouraged light exercise and not going on complete bedrest. I did raise concerns and pointed out the trends which seem to have spiked liver distress (a 20 minute dog walk, with a 30 minute break in between to see.my friend and her baby caused extreme projectile vomiting of pink pile about an hour later and saw my ALT levels hit 760 and I was kept in hospital for 5 days until they started to reduce... With bed rest). She insisted I try. So I did. I walked 5 minutes from my house to where my SIL works to drop off her birthday card. She made me sit down and drink water and we chatted for 10 minutes before I walked 5 minutes back home. Later that evening and all through the night I sufferd with extreme heart burn and spent the night vomiting bile. When I went in for bloods the next morning, just two days after my previous bloods, my bile acid had jumped from 17 to 33.

Essentially I am in pretty constant pain and discomfort. My toilet habits are not fun (liver distress makes digesting food properly rather hard... And causes dark urine and pale diahorrea).

I itch all the time. I cannot sleep more than 45 minutes a time without walking in pain. So I am exhausted.

I am also under the perinatal mental health team for bipolar disorder and Asperger's (which is why it's a little annoying that this consultant has only seen me for the first time this week when I have been under her care - supposedly since my 8 week booking in scan - here).

I am at the end of my tether. I want my baby to have the best chance at life. But that's not happening. With OC early delivery between 37 and 38 weeks is recommended as stillbirth risks increase after this point. Earlier intervention is recommended if the mother is in distress. My lover has been touch and go since July. The surgical and heptology teams would have delivered me already but obstetrics wanted to wait and see. Fine. My levels came down enough when discharged both times. But still quite borderline. When a severe billiary spasm attacks occurs it triggers full on contractions (these have been seen on CTG monitors when I'm an inpatient) which only subside when the pain begins to reduce/ the attack ends.

If I follow the consultant's gentle exercise advice my liver levels will spike to those dangerous levels leading to an inpatient stay or emergency C-section.

She wants to 'wait and see'. She also said the only effective painkiller - which she would not recommend at this point if it can be avoided - is morphine, on a drip as an inpatient. Though this would lead to my baby having to go through morphine withdrawal.

Yesterday I broke. I went in for blood tests at 8:30am. The lab was supposed to return bloods quickly. They did not return them until 1:15pm.

They then had to be reviewed by heptology and the junior obstetrician spoke to me (really lovely lady!)

She can see the pattern, she can see the issues. She cannot sign-off a premature delivery. Only staff consultants can. So I have to wait until next Tuesday. She has arranged that neonatal doctors be present so that a plan can be formed. Because at the moment there is no delivery plan.

It's clear i'm at risk of pre-term labour. It's clear that my continued liver distress is harming me - at the moment it is hopefully reversible but this becomes less and less likely with every week I remain pregnant. As week's progress and my body struggles to deal with the liver issues the risk of fetal distress increases significantly.

I want to have an elective C-section (as I'm too physically and mentally exhausted to attempt a vaginal delivery for more than a few hours and this is already in my notes. I'd prefer a vaginal delivery but if I go for that I will have to be prepped to go for an emergency C-section if it doesn't happen quickly and smoothly. So it makes sense to just go straight to the c-section to me. And I want it before 36 weeks.

How do I advocate for this?

Despite the pre-term risks I've not even been given steroid shots yet. Because this consultant wants to wait it out till the last minute and just deal with an emergency as and when it arises.

I am.so distressed. My care, other than this one woman's lack of plan or engagement, has been amazing. I've held it together as best I can for weeks and weeks now. But with no plan, no end in site, the continuing pain and no solution for it... I'm starting to break mentally. I worry about what happens if I do break. I'm already at an enhanced risk of post natal depression and post natal psychosis. I live in Wales, where there are no mother and baby units. If I get really bad I won't be able to be cared for at home and will either be separated from my new baby. Or my new baby and I will be separated from my beloved husband and sent to Birmingham and Bristol. If I'm sick, regardless of trying everything. Then I'll bite the bullet and do that. But I don't want to be out in that position because one consultant doesn't want to put anything in pace to protect my mental and physical well-being because at the moment my baby is doing okay.

I think baby's odds are better after 34 weeks but obviously they like them to be as fully cooked as possible. I don't have any experience but it all sounds awful and I hope the consultant is more helpful when you next see him

Hopefully. I'll be close to 34 weeks when I do. I physically and mentally cannot get to 37 weeks - and I think she has just failed to take that onboard on anyway. Even if I could, she still hasn't arranged anything for C-section or induction. It's not even been discussed.

Your situation sounds awful and you have my sympathies. I don’t know enough about your conditions to comment, but due to the issues I’ve had in my pregnancy I was convinced that a csection would be recommended at around 38 weeks. When I spoke to my consultant it was a flat out no. She feels there’s no need for a section, or to induce me early.

I had seen a different consultant 2 weeks previous (he was just filling in) and he seemed much more open to the idea but as I wasn’t his patient he didn’t want to give me a definite answer. However I felt he understood my reasons.

Is it possible that you could get the opinion of another consultant? I would also suggest that you write down all your reasons before going in as I know I get muddled in my appointments as there is so much to remember.

Ive had two pregnancies with servere Obs Cholestasis - it's nothing short of horrendous esp as diagnosed at beginning of 2nd trimester each time.

I always aimed to get to 37 weeks (term) - my inductions were booked at around 34-35 weeks once we had a picture built up of how my body was (or wasn't) coping.

I was induced at 36 weeks and then 36 Weeks 5 days due to Cholestasis being unstable.

I would speak with your consultant - raise your concerns. If you feel your not being listened to then request a second opinion. Ask when the plan is to book induction / C section in.

Do you know your trusts policy on OC?

Some aim to deliver at 37weeks and some 38 weeks now so varies from trust to trust.

I feel for you it's truely horrendous I would cry myself to sleep and lie in freezing cold baths at 3am to try eliminate the itch. Everyone says about these 'amazing' creams which work for them but as the itch is coming from an internal problem and for me certainly no cream helped.

I would speak to you consultant and look into your trusts guidelines locally - they may seem like they are being arkward but they need very very good reason to deliver earlier so really are trying to do what's beat for you and baby.

Thank you both. I'm in Cardiff and I can't find any guidelines. Other consultants in the same department were advocating 37 weeks induction. Nothing later than 38 weeks. The liver/ gastro team were pushing for earlier.

This lady seemed vague about 38 weeks... I think she said as close to term as possible/ 39 weeks at one point.

She acknowledged I was in extreme pain. But vetoes any painkillers because my liver is in a bad way. She seemed aware that I am barely hanging on mentally and physically. But there were no dates, no plan. She seemed to only care that baby was okay. I just, I felt like I was maybe being g selfish for worrying about my pain and what is going on. Like I should only care that my baby is okay. And I do care that my little boy is okay. I really love him already but I can't keep doing this. I just can't. I could cope with the awful itch. I think I could. If was just that. But it's the waves of pain. The not being able to sleep for more than 45 minutes at a time - if I do it hurts or I feel like my throat and inards are on fire - and then I often throw up. My liver area is so swollen, you can feel that it's warmer to the touch than everywhere else on my body. I feel bruised from the inside out all on my right side - abdomen, back. All. I always thought I had an okay pain threshold. I've got through kidney stones a few years ago. I've had root canal work done when they couldn't get the injection to work and I could still feel everything. I have never been in so much pain. While unpleasant, I can cope with the short bursts of contractions I get during/ after a spasm they're not as bad as the spasms or how much my body hurts when I can't stop throwing up. My ribs feel sore from throwing up bile. Everyone else has been so nice, everyone else has offered kindness and concern and tried to help me hold it together. But not the woman who is supposed to have the final say. She just wants to wait and see and get me to 38 weeks without any pain relief. I just can't. I'm getting to the point where I'm almost tempted to do my own C-section just to end this. But I don't want to hurt my baby. I want my baby to be okay. I am so desperate right now.