Handhold please - in hospital and today is the day

[mapa289]

I'm 23 weeks pregnant and was diagnosed with early onset preeclampsia several weeks ago. It was a huge shock as everything has been going well so far. First baby and much wanted after years of trying.

My blood pressure has been high and I've been in and out of hospital being monitored. Fortunately I've staved off any other symptoms so far, like issues with kidneys, liver, etc, but we're aware it could develop at any time.

We have another growth scan today to check the baby and then have been told we'll need to decide to terminate or continue ASAP before the 24 week cut off.

We've been absolutely numb for weeks. I don't know how we make this choice. If baby looks good and we go ahead there's every chance I get sicker in just a few days and we require a very premature delivery and baby may not make it. Or I could last another 6 weeks with no symptoms. There's literally no way to know.

I've really struggled to process this, especially the lack of information they can give us, though I know it's not their fault. It just seems crazy that we have to make this decision almost completely blind. I'm worried for our baby but my husband and my parents are really worried for my health too, which I know is a factor.

Just need a hand hold please to get through today and whatever's to come, this has been so overwhelming.

I do, I have 3 positive stories!
My NDN's granddaughter has given birth to 3 prem babies <26 weeks. The younger two we didn't think could survive but they are now 11, 9 and 2!!

Baby1 - boy - born at 26 weeks - needed lots of NICU time but fine
Baby2 - boy - born at 24 weeks - didn't think he would make it and his lungs were underdeveloped. Nicu time but went home much sooner than we thought he would
Baby3 - girl - born at 23+4 - mums body was threatening labour for 2 weeks but doctors managed to keep baby in. I remember her waters were leaking for a long time. Mum was in hospital for the last 2 weeks of pregnancy before baby came. Mum had c-section and sterilised while in. Baby had lots of nicu time and came home

Hoping for the best for you xxx
It's great that your dh can stay with you.His mind must be going crazy worrying about you both. You poor things just don't deserve it xxxx

Just read your update
In your position I would hang on
They can do a Section at any time within minutes, so I wouldn't be put off if they say you need to make a quick decision
Once baby is delivered your health is restored
Personally I would give baby a chance. They can never be sure how baby will do until he is delivered

Sorry, my post above crossed with your update.

Really recommend doing joint 'parents of oreemies UK' on Facebook OP - lots of people in similar positions in pregnancy and tales of hope and survival x

I had protein in my urine and was monitored for weeks (total bed rest at home and then hospital bed rest for three weeks). It never developed beyond protein in urine. Preeclampsia is very serious, but perhaps you can bedrest in the hospital for careful monitoring and maybe they can give the baby steroid injections to speed the development of the lungs. Wishing you all good things—this is so hard.

Yep I suppose they wouldn't even need to induce, with a section they can just do it.

Is there any harm (mentally very tough I know) in taking it day by day? If they are monitoring you closely I would just stay put and see what happens. Better than being pressured into making a decision and then regretting it for the rest of your life. Best of luck and I’m sorry you are in this situation x

I don't think they're trying to pressure us into a decision as such, but he said he wanted to us to us to know that we have the option of avoiding a more traumatic birth if the outcome doesn't look good. He said some people would prefer to have zero uncertainty about their baby's future and that was okay. He also said some people would say under no circumstances would they terminate and that's also okay.

Honestly I've been told so many times now by people here how rare this is for it to develop so early, for my blood pressure to be difficult to control (it keeps spiking randomly in the last few days), and now for the FGR to be so drastic. I think they're just all quite pessimistic about the outcome based on a situation they rarely see / haven't seen before.

If they told me I could definitely make it to 24 / 25 weeks, even in hospital with an IV and all the steroids, I would do it in a heartbeat. But they're not confident and currently, even if born tomorrow, baby would be around the 19 week mark in terms of weight and development.

I'm so sorry you are going through this.

We're essentially being told that baby won't be okay though due to the severity of the disease and the impact it's already having on them and me at such an early stage in pregnancy. I've been desperate to hold onto even the smallest % of hope but I also can't say I'm absolutely happy to bring a baby into the world just for them to likely pass away or, if they can survive, have crippling health issues. I don't think struggling with that decision is wrong.

OP, I'm so very sorry you're going through this. Just offering my hand and all my best wishes. Whatever you decide to do will be the right choice. xxx

Gosh @HommeSweetHomme you must be some kind of record breaker surviving at 22 weeks in 1977 - what was your birth weight?

I am sure you will be famous as most 22/23 weekers have only survived more recently due to advances in medical knowledge and technology.

dear @mapa289 this is a decision only you can make. Either way, it is an act of love. You will decide to take a chance on a healthy child (or one with issues) OR you can choose to terminate and save a child from a potentially life limiting illness or disability. NEITHER is the wrong choice. Make a decision then be at peace with it. I was prepared for it and chose to keep going. It worked out amazingly well, not all do. In my prayers today. Whatever you decide is the RIGHT choice

Just wanted to drop in and offer hugs OP. Please don't listen to the insensitive a-holes lecturing you on how 'simple' the decision making is. Most of us understand how cripplingly difficult and conflicting this must be. It sounds like you're really taking on board what the doctors are saying and approaching your decision making with courage and prudence. Keep going and sending you much love whatever you decide xx

OP, please ignore anyone who in any way tries to minimise this. It is a literal life and death decision for your child, and not one I would wish on my worst enemy. Reading your posts, my heart breaks for you as I can hear the anguish and uncertainty. You are in an impossibly difficult situation because you are being asked to make an informed decision without the necessary information.

Doctors can base it on percentages, livelihoods, previous examples etc. But the problem is that you can't have 70% of a baby and someone else's experience may not correlate with yours.

But please be reassured that there isn't a wrong decision. You cannot make a wrong decision. Because either you choose to continue out of love for your baby or you choose not to cause suffering and potentially life limiting conditions out of love for your baby

Whatever decision you make will be made with love and that is all you can do. I will be thinking and praying for a good outcome for you and peace and strength in whatever choice you make xx

So sorry that the news today wasn't good. Some other posters above have suggested the BRAIN model which sounds like a good framework for weighing things up. Take the time to make the decision which feels right to you, and I would really recommend looking at the info and support available from the various sources listed above. Tommy's website has info on IUGR/FGR which might also help.

Just to let you know that I am thinking of you and sending very unMumsnetty virtual hugs.

OP you are clearly taking on board advice given and wrestling to reach a decision. Whatever you decide to do it WILL be the RIGHT decision for you and your baby.

No one else knows you or your baby the way you do. No one else has to live through or with your particular circumstance and ultimate decision.

@porridgeisbae why judge?

It’s not wrong. I’m so sorry you’re in this position. It’s awful.

Ima orry you're going through this. I can't imagine having to make this decision.

Just wanted to say I had PET in my first pregnancy. I got it suddenly and severe at 36 weeks and baby was born at 36+4. My second pregnancy they monitored me throughout using growth scans and also put me on aspirin straight away. My baby however came suddenly at 29 weeks and I didn't get PET at all so there is a chance in future pregnancies it may not develop again.

Hand hold for you X

So sorry OP, what a hard decision for you to make. I am sure you are researching everything as much as you can before you decide what's best.

I can sympathise. I had pre-eclampsia but it wasn't diagnosed until 36 weeks at a routine growth scan and I was induced the same day. My health declined drastically after diagnosis. I developed HELLP syndrome as well as AFLP. I was in high dependency and my body was showing signs of having eclampsia. I was very unwell and taken for an emergency c-section. I was very lucky that both me and baby survived, but it could have been very very different if I hadn't had a scan that day and was left for another day. I had felt relatively OK until that point.

You do have to take your own health into consideration too, as thinks can escalate so quickly. I really hope it all goes OK for you.

Sending a huge hug OP. My son was born nearly 18 years ago at 24 weeks BUT I didn't have pre eclampsia and at birth he was in good health and at a good weight (725g). I hate to say this, but you know it already, and I say it with 100% kindness and compassion - a baby affected by PE at this early stage, and around the average size of 19 weeks, is going to have a long and difficult journey with an uncertain future.

I'm afraid over the years I have learned to take with a pinch of salt bold claims of being born extremely prematurely and with no ill effects. After my boy was born, a family friend insisted that she too had been born at 24 weeks. She celebrated her 100th birthday very recently. I have no doubt that she was born very prematurely for the time (1920s!), but I'm not convinced that being born at 24 weeks 100 years ago could have been possible, given the amount of incredibly complicated, modern equipment that kept my boy alive for his first few months.

My son was in NICU for 120 days and it was a very long, rocky journey and we nearly lost him on multiple occasions. He has multiple complex disabilities in spite of having been in good health at birth. Friends' similarly premature children are also permanently affected.

If my message causes you distress then I apologise unreservedly and will ask MN to withdraw it. However I can see that you have been given realistic (if not terribly helpful) information from your hospital team, and as the mother of an extremely premature child, I wanted to be honest with you. Sending love and hope. If you want to chat then please do PM me. I don't have experience of PE but I do of extreme prematurity. x

Hi OP,
Just sharing my story hoping it helps a bit. My high BP was picked up at a routine appointment when I was 28 weeks- it was 180/130. I had 3 separate hospital stays for 3/4 days each over the course of 1 month and was given a cocktail of BP medications to try and keep it under control. Similarly to you I was given mixed messages about the next step and was ready for the hills at one point. In the end I was diagnosed with severe pre-eclampsia which was evolving into HELLP syndrome- I was given steroids for the baby’s lung development and put on a magnesium sulfate drip to reduce the chance of seizures. I was given an emergency c-section and my baby was delivered at 33+5. He had a stay in neonatal for a month and is doing great- he’s 6 months old now. I know it seems and sounds scary but you go to into autopilot and it’s all over before you know it- I would hang on as long as you can as my experience is these things change so rapidly that even the doctors struggle to make a definitive decision. Hope all goes well for you good luck x

You can only do the best you can with the information you have available to you. It’s an incredibly difficult and heartbreaking situation to have to consider, with so so many unknowns. I have no useful advice, but I’m thinking of you, and please feel like you can drop by to talk whenever you need to.

I am so sorry that you've been placed in this impossible situation, OP. How awful for you to have to navigate through all this uncertainty.

I send you my love, and I will keep you, your husband and your baby in my prayers. Please remember that there is no wrong decision in these circumstances. It's easy for me to say that but I hope you don't beat yourself up too much, trying to figure out what to do. It's especially hard for you because you seem to be getting mixed messages from the staff who are caring for you.

Hoping for a good outcome for you.