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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Handhold please - in hospital and today is the day

251 replies

mapa289 · 31/07/2023 06:23

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.

OP posts:
WantingToEducate · 31/07/2023 16:00

mapa289 · 31/07/2023 15:04

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.

Show quote history

It’s not wrong OP, not at all. It’s a very difficult decision that you face and it’s so easy for people to tell you what they would do when they haven’t experienced the same themselves.

This is obviously causing you so much hurt and as another poster said so well, whatever decision you make will be made out of love for your baby. Many women have to make heartbreaking decisions to TFMR because they don’t want to bring a child into the world for it to only pass away at birth, or to suffer and be in pain, or live a life with severe health challenges and those worries are all out of love for their baby, just like how your decision will also be out of love for yours x

UneasyMe · 31/07/2023 16:09

OP, I found the 23 weeks mark hellish, but once I reached 24 weeks it was all out of my hands - no doctor mentioned “choices”again after that. (Baby was <5th centile, too.) Instead, it was about preparing me for chances of survival at birth, then NICU life, then potential long term outcomes. That helped me a lot but I don’t know if it’s standard practice or would apply in your case.

Wowokthanks · 31/07/2023 16:11

Mapa, I'm so sorry to read your posts.
I'm a pre-eclampsia baby. I was born at 32 weeks, after my mum had early onset pre-eclampsia. I was born at 3lb 2oz- and have no long term issues related to my prematurity.

My mum had daily blood tests and was in hospital for quite a while before I was born,on bed rest but luckily we made it. I was out of hospital 7 weeks later.

I'm hoping you get some answers soon and I hope they're positive.
♡

Wowokthanks · 31/07/2023 16:14

Also, maybe worth saying, that not every pregnancy is the same.
My mother had 4 children, only 2 were pre-eclampsia pregnancies, and in comparison they were very different too. So please try not to think this will be what every pregnancy of yours will look like.

Parentalalienation · 31/07/2023 16:17

Sending you a hand hold and hoping they've either sent you home with hope or admitted you for bed rest. If your baby is viable then I think they'll do everything they can to keep them in situ for a while longer and monitor you (be prepared for a very emergency section)!
My cousin was born at 23 weeks back in the 70s and after quite a while in NICU has done brilliantly in life.
If your baby isn't viable then sending you every thought over the coming days x

boydoggies · 31/07/2023 16:19

Hey OP, I've been keeping up to date with your thread.
You are in such a challenging and emotionally fraught situation. The fact that you have a modicum of 'choice' over your little one's future makes it harder even still. The outcome is a whole spectrum of variables and this makes the decision even harder. Whichever path you take will not be wrong.
It's inspiring to hear about the positive and amazing outcomes that people have kindly shared. Science and medicine really has come a long way.
There can also be very sad outcomes too. A very close family member lost her first baby at 37 weeks, second baby born healthy at 37 weeks, 3rd baby born at 29weeks, most of her 1st year of life spent in/out of hospital. She has lots of special needs and is vulnerable although very much adored and a valuable member of the family. 4th baby died at 30 weeks.

This post isn't to put the fear of God into you but to remind you that life is so bloody hard at times.
With the conflicting advice you are getting in hospital makes it harder still.
Thinking of you and yours.

Auntieofdragons · 31/07/2023 16:20

whateveryouwantmetosay · 31/07/2023 06:27

Firm hand hold and a stark reminder that doctors are (often) wrong. Hang in there and DO NOT give up, even when they tell you to!!

What a ridiculously dangerous statement. Doctors are the ones with the medical knowledge and insight into OP’s health. NOT some random on the internet who has never met her and is telling her to put the unborn baby’s health above her own safety.

OP as hard as it all is, it’s absolutely your call. Don’t be swayed by anything except you and your partner and the medical advice you have been given.

Parentalalienation · 31/07/2023 16:21

And my page hadn't updated so I didn't see your most recent post. I'm so sorry to read that, what a difficult decision you have. Lots of thoughts, hand holds and prayers if you do them.

Amniceandgenuine · 31/07/2023 16:26

OP I am thinking of you and sending my love to you whatever the outcome ❤️

slore · 31/07/2023 16:32

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PurplePansy05 · 31/07/2023 16:32

This is so, so difficult OP. Big hugs. I haven't been in your position but I've experienced baby loss before having my son and I can only imagine there are no easy answers here at all. I think you need to breathe, take a step back and go with your gut here. I think I would take every possible opportunity to help the little one and yourself. You do know there are options to terminate post 24 weeks, yes? Have they talked you through this? This might not be necessary because the pregnancy still can go ok, but it's important you know all the options. I think I personally would continue but with strict monitoring and be prepared to make decisions depending on how the situation unfolds. You do know that their assessment of the size of your baby from scans may well be innacurate too? This happens a lot.

Big hugs again. You need to go with what you feel is right here. xx

Dukeydo · 31/07/2023 16:39

greylamp · 31/07/2023 15:48

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

This is pretty much my story although I developed pre eclampsia and then deteriorated rapidly at about 35 weeks developing eclampsia and then HELLP and other conditions. Baby was ok it was my health that was the issue.
Baby was fine - I was delivered under Professor Nicolaides at Kings in London. Said baby is now 16 and seems to be doing well, she’s just completed her GCSEs at level 9 for 14 of them and a typical teenager.

I then saw an expert at Guy & Thomas on eclampsia and was told I had a 1% chance of the same and to take aspirin before and through the first 12 weeks.

I suffered with severe HG with baby 2, and then eclampsia and second baby was delivered 4 weeks early and fine at Kings again although very small as they had stopped growing - fast forward a decade or so and this baby is also absolutely 💯.

I wish you all the best OP I remember the constant stress and decisions all the time. Good luck.

Wowokthanks · 31/07/2023 16:39

I wish people would stop telling OP what she should do.
OPs situation is a serious one, that could potentially lead to loss of both her babies, and her life. It is absolutely not anyone else's decision to make or sway her into.

Her medical professionals will guide her on what is best for her health, and the health of her baby so she can make an informed decision.

I can't believe strangers on the Internet are really trying to tell OP what to do.

Appleofmyeye2023 · 31/07/2023 16:49

Sorry, but I’m confused by this
i thought a termination can be given at post 24 weeks where:
”They can be carried out after 24 weeks in very limited circumstances – for example, if the mother's life is at risk or the child would be born with a severe disability.”
Ok, not something you’d do except in an emergency and a horrible outcome for parents. But obviously OP has a wished for pregnancy and will obviously want to try to carry on until she gets clear explicit statement her health is at risk imminently to continue - which we’d all hope is past 24/26 weeks where survival rates and prognosis is better, especially if now, with fore warming could give steroids ?

seems like a pretty unnecessary comment by doctor to basically force a mum to choose between putting herself at risk or termination at this stage. How was this helpful ?

what am I missing here ?

Original poster
mapa289 · 31/07/2023 16:55

Wowokthanks · 31/07/2023 16:39

I wish people would stop telling OP what she should do.
OPs situation is a serious one, that could potentially lead to loss of both her babies, and her life. It is absolutely not anyone else's decision to make or sway her into.

Her medical professionals will guide her on what is best for her health, and the health of her baby so she can make an informed decision.

I can't believe strangers on the Internet are really trying to tell OP what to do.

I had a feeling I'd open myself up to this by posting to be honest, but it's been great to read some of the responses.

I am really surprised by the number of people who would clearly carry on regardless of any kind of risk to them or the baby. I honestly find that really admirable but it's not as easy for me to have that kind of conviction at this point.

OP posts:
drinkingteaslowly · 31/07/2023 16:57

Hi @mapa289 I didn't have PE but did have another placental condition that caused severe FGR / IUGR. This was discovered at 16 weeks and my baby was already small enough that termination was brought up by the consultant. We were referred for a second opinion and our baby was found to be really active, albeit tiny, which meant that against the odds they were thriving (somewhat) despite the adverse conditions. We were monitored really closely and getting closer to the 24-28 week window where adverse birth outcomes were very possible was a scary time. I remember the day of my 20 week scan wondering if this was the last morning I'd be pregnant depending on FGR at that stage.

As is often the case, a lot of my baby's growth concentration was in their head (clever bodies we have) so at 20 weeks their head was around 4 days behind and their long bones were 2 weeks behind.

At 23 weeks, their long bones were almost 3 weeks behind, weight 2 weeks behind and head still hanging in there at under a week behind.

Because they seemed otherwise well and active we decided to hang in there. We were told we just had to get to 28 or 29 weeks and at that stage they thought this would be possible.

As it was, baby stayed on their growth curve and each week that passed the consultants said maybe they could manage a week more. I ended up having an emergency section at 33 weeks. Baby was 0.2 percentile but otherwise ok. They stayed in NICU until due date. Now, almost a year later, they're up to the 5th percentile so catching up.

I know we were some of the lucky ones. It really was a case of taking it a day, sometimes even an hour, at a time, breathing deeply and trying to stay in the moment, as it was all so uncertain. All I could really hang onto was loving my baby, and doing my best to love our irregular experience of being and growing together, regardless of the outcome.

In terms of the 24 week cut off, I just want to add that I got conflicting information from different hospitals. One hospital stuck hard to that deadline. Another was willing to terminate up to 28 weeks on medical grounds and we were also told that there are other units that carry out later terminations when absolutely necessary. I know this is awful to think about but for me having all this laid out helped me cope.

Whatever happens and whatever you choose, I am wishing you and your baby and your family all the very best.

suspiciousmums · 31/07/2023 16:59

Sending lots of love OP, I’ve had severe pre eclampsia twice, feel free to message me. My middle child was born at 28 weeks weighing 2lbs 1oz, severely growth restricted due to the pre e. I was incredibly unwell, as was my daughter. It was utterly horrific, she had a very bumpy NICU journey and awful reflux and failure to thrive after discharge from hospital. However, she is going to be 2 in a couple of weeks. She’s utterly incredible, she amazes me everyday. She’s absolutely smashing things development wise, and is still a tiny dot but holding her own.
At 23 weeks maybe babies survive and thrive, especially if you have the steroids and magnesium sulphate pre birth. If cord flow is ok and they are able to stabilise your bp then babies chances go up every extra day you can keep them cooking, pre eclampsia is like that for me it was looking at me your by hour, bloods every four hours in the week leading up to delivery. My next pregnancy I managed to get to 34 weeks as with my history they kept such a close eye on me. Pre eclampsia is so cruel, sending you lots of strength and please feel free to message me at any time. It’s also worth joining the pre eclampsia FB page (it’s utterly fantastic, such a wealth of knowledge) and also the preemie parents FB page as lots of other women have been through pre e too on there x

Original poster
mapa289 · 31/07/2023 17:02

drinkingteaslowly · 31/07/2023 16:57

Hi @mapa289 I didn't have PE but did have another placental condition that caused severe FGR / IUGR. This was discovered at 16 weeks and my baby was already small enough that termination was brought up by the consultant. We were referred for a second opinion and our baby was found to be really active, albeit tiny, which meant that against the odds they were thriving (somewhat) despite the adverse conditions. We were monitored really closely and getting closer to the 24-28 week window where adverse birth outcomes were very possible was a scary time. I remember the day of my 20 week scan wondering if this was the last morning I'd be pregnant depending on FGR at that stage.

As is often the case, a lot of my baby's growth concentration was in their head (clever bodies we have) so at 20 weeks their head was around 4 days behind and their long bones were 2 weeks behind.

At 23 weeks, their long bones were almost 3 weeks behind, weight 2 weeks behind and head still hanging in there at under a week behind.

Because they seemed otherwise well and active we decided to hang in there. We were told we just had to get to 28 or 29 weeks and at that stage they thought this would be possible.

As it was, baby stayed on their growth curve and each week that passed the consultants said maybe they could manage a week more. I ended up having an emergency section at 33 weeks. Baby was 0.2 percentile but otherwise ok. They stayed in NICU until due date. Now, almost a year later, they're up to the 5th percentile so catching up.

I know we were some of the lucky ones. It really was a case of taking it a day, sometimes even an hour, at a time, breathing deeply and trying to stay in the moment, as it was all so uncertain. All I could really hang onto was loving my baby, and doing my best to love our irregular experience of being and growing together, regardless of the outcome.

In terms of the 24 week cut off, I just want to add that I got conflicting information from different hospitals. One hospital stuck hard to that deadline. Another was willing to terminate up to 28 weeks on medical grounds and we were also told that there are other units that carry out later terminations when absolutely necessary. I know this is awful to think about but for me having all this laid out helped me cope.

Whatever happens and whatever you choose, I am wishing you and your baby and your family all the very best.

This is really interesting, thank you. Yes, head is hanging in there as well but everything else has really fallen behind.

I think it's the factor of both that's making it hard for them to give us much of an assessment I think. If it was just FGR without the severe preeclampsia it would be a slightly different outlook, and vice versa, but as it is nobody seems to know what to say or suggest.

OP posts:
SirVixofVixHall · 31/07/2023 17:03

mapa289 · 31/07/2023 16:55

I had a feeling I'd open myself up to this by posting to be honest, but it's been great to read some of the responses.

I am really surprised by the number of people who would clearly carry on regardless of any kind of risk to them or the baby. I honestly find that really admirable but it's not as easy for me to have that kind of conviction at this point.

Show quote history

I am so sorry that the scan wasn’t better news OP. It is heartbreaking to read. Whatever you decide to you, I hope you have lots of love and support around you, and that you are never again faced with such a painful and traumatic choice.

Covidandapartridgeinapeartree · 31/07/2023 17:05

"I had a feeling I'd open myself up to this by posting to be honest, but it's been great to read some of the responses.

I am really surprised by the number of people who would clearly carry on regardless of any kind of risk to them or the baby. I honestly find that really admirable but it's not as easy for me to have that kind of conviction at this point."

@mapa289 please take what these people are saying with a pinch of salt. I was advised during my pregnancy that my DC may not survive/have very severe disabilities and late stage termination was discussed. Someone told me that in that situation, they'd be "selfless" and continue on to allow organ donation. Honestly ridiculous. They subsequently had a very minor pregnancy complication and admitted how stupid they'd sounded and that they were wrong. People have zero idea how they'd react in that situation. It's very easy for us all to imagine how we'd feel sitting comfortably completely unattached from the decision. I certainly couldn't have predicted how I'd feel/reacted in my situation until I was in it despite other people claiming to have that ability. You'll make the right decision for you and your family.

BertieBotts · 31/07/2023 17:06

I am really surprised by the number of people who would clearly carry on regardless of any kind of risk to them or the baby. I honestly find that really admirable but it's not as easy for me to have that kind of conviction at this point.

I think it is easy to make a flippant "I could never" post on an internet forum when something isn't happening to you.

When you are really faced with a situation IRL it is not the same and people would not have the same reaction as they think that they would.

It's clearly a decision that needs to be made in conversation with the medical team and not an easy one by any stretch of the imagination.

I do happen to know two babies born at 6 months pregnant over the last year, both of them are doing beautifully and so are the mums. A woman on my NCT course also gave birth to her son early at 6 months pregnant. He is 15 now and doing really well. Just in case it helps to have some hope.

suspiciousmums · 31/07/2023 17:10

OP I’ve seen you asked about subsequent pregnancies after pre e, I definitely recommend the pre FB page but statistically women who have had pre e do not develop pre e in subsequent pregnancies, however they are at more risk of developing it than a woman who has not had it in their first pregnancy. In those women that do develop pre e and had to deliver early, those women deliver on average 6 weeks later than their previous pregnancy. (Completely accurate for me, my first was 41 weeks no pre e, 2nd 28 weeks severe pre e and their 34 weeks severe pre e). The good thing is that if you have it once then they watch you like a hawk I’m subsequent pregnancies and you would start prophylactic aspirin at 12 weeks to reduce the chance of developing pre e again, and also have growth scans regularly x

Original poster
mapa289 · 31/07/2023 17:11

suspiciousmums · 31/07/2023 17:10

OP I’ve seen you asked about subsequent pregnancies after pre e, I definitely recommend the pre FB page but statistically women who have had pre e do not develop pre e in subsequent pregnancies, however they are at more risk of developing it than a woman who has not had it in their first pregnancy. In those women that do develop pre e and had to deliver early, those women deliver on average 6 weeks later than their previous pregnancy. (Completely accurate for me, my first was 41 weeks no pre e, 2nd 28 weeks severe pre e and their 34 weeks severe pre e). The good thing is that if you have it once then they watch you like a hawk I’m subsequent pregnancies and you would start prophylactic aspirin at 12 weeks to reduce the chance of developing pre e again, and also have growth scans regularly x

Thank you, it definitely helps knowing we'd be able to try again.

OP posts:
WantingToEducate · 31/07/2023 17:14

mapa289 · 31/07/2023 16:55

I had a feeling I'd open myself up to this by posting to be honest, but it's been great to read some of the responses.

I am really surprised by the number of people who would clearly carry on regardless of any kind of risk to them or the baby. I honestly find that really admirable but it's not as easy for me to have that kind of conviction at this point.

Show quote history

I’m surprised too OP.

If I knew that my life was at risk if I continued with a pregnancy, and a pregnancy that also carried huge risks to the baby, including their possible quality of life should they survive, I genuinely don’t think I could continue with it.

I’m sorry to hear that your baby’s growth has slowed, have they spoken to you about what would be the realistic outcome if they did do the c/s at 24 weeks if they felt it was safe to wait until then?

Conversations like that can be so difficult to have, but I think it’s so important that you are told the truth about what the likely outcome will be, both short term and/or long term for your baby should you choose to continue with the pregnancy.

Any choice you make about your pregnancy will be a valid choice as long as it is also an informed one x

Angliski · 31/07/2023 17:17

Doctors can be extremely scary and unpleasant. When I was pregnant one of the consultants was pushing for induction and said ‘how will you feel if your baby dies because you didn’t take my advice?’

I was disgusted.

eight months ago I was told I would never walk again. I’ve just walked home. They were wrong.

ask what happens if you do nothing. then stay as still and calm as you can for one day and then another and then another.