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Pregnancy

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

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:
anyolddinosaur · 31/07/2023 18:49

I don't much like abortion, I accept it's sometimes necessary and that women should have the choices they currently have. I like people being given hope based on possibly false stories even less. Tommy's advice is hard to read but necessary. Every single day matters when you are talking about this degree of prematurity.

OP your doctors cant give you certainty but I hope they may give you more consistent advice. Whatever decision you make be kind to yourself, you are doing the best you can in extremely difficult times.

CatkinToadflax · 31/07/2023 18:53

JenWillsiam · 31/07/2023 18:24

It’s not fair to give false hope. Everyone knows of the miracle baby but it doesn’t make it a reality. Same as IVF. We all know someone who’s been successful…

I completely agree. I posted above about a family friend who insists she was born at 24 weeks…. and has just celebrated her 100th birthday. She never mentioned this until my son was born at 24 weeks. Bless her, she’s a lovely lady, and I don’t doubt that she was born prematurely, but I simply don’t see how this can have been possible.

The number of people who claim they know someone who was born exceptionally early a very long time ago and is “over 6ft tall and they’re absolutely fine!” astounds me. I have heard so many of these comments over the years. It’s certainly very different to my own experience as the parent of a 24 week baby, and of the other parents I know whose children are in the same situation. My son has complex disabilities. He will almost certainly never live independently. Every single one of the 24 week babies I know has some form of disability, ranging from mild to severe.

As I said above, I really don’t mean to upset you OP - but on the other hand, as a parent who stood and watched my son through an incredibly long and horrible and unpredictable journey, and is there to support him every day of his life, I feel that the “6ft tall and absolutely fine!” comments need balancing with lived parental experience.

Hiddenvoice · 31/07/2023 18:54

Op I have no advice to give but I’m wishing for the best for you, your baby and dh. This is the worst position to find yourself in.

Janey3090 · 31/07/2023 18:55

I’m so sorry OP, I don’t have any advice but just wanted to offer you a handhold. What a difficult decision for you to make, I hope either way the right decision becomes clear soon (and that you get more consistent advice!)

sending a hug xx

TooOldForThisNonsense · 31/07/2023 18:56

So sorry OP what a distressing situation x

mapa289 · 31/07/2023 18:57

@CatkinToadflax I appreciate your honesty. I know many people want to help by sharing their positive stories and I think it's amazing that some people can have such hope. I'm naturally a very pragmatic and probably also quite pessimistic person. I can't imagine saying goodbye to this baby, but I also can't imagine them being born with potentially such huge risks and watching them go through that.

OP posts:
CatkinToadflax · 31/07/2023 19:00

mapa289 · 31/07/2023 18:57

@CatkinToadflax I appreciate your honesty. I know many people want to help by sharing their positive stories and I think it's amazing that some people can have such hope. I'm naturally a very pragmatic and probably also quite pessimistic person. I can't imagine saying goodbye to this baby, but I also can't imagine them being born with potentially such huge risks and watching them go through that.

Sending love and best wishes to you. You are very much in my thoughts. Flowers

Shelby2010 · 31/07/2023 19:03

I hope this question doesn’t come out the wrong way, but will it make a material difference in terms of maternity rights if the loss of the baby is counted as a neonatal death rather than a termination? My understanding is that after 24wks you will be entitled to full maternity leave & pay - you may need time to recover & grieve, without pressure to go back to work too soon.

I am sorry you are going through this.

VikingsandDragons · 31/07/2023 19:06

I know there are people saying not to advise medically, but some of us have been down your road so I'm going to pitch in my story because honestly I'm livid that anyone has suggested termination to a vulnerable and scared woman with a wanted pregnancy at this stage due to pre-e unless it is very rapidly progressing and the life of the mother is currently at risk which you've not indicated yours is (and frankly if you're posting and being left to make a decision it seems less likely). You do not need the extra stress and if you go on facebook and search for parents of premature baby groups you'll see that there are scores and scores of 23 weekers born small for dates who are thriving. The baby in the incubator next to ours was born at 425g, less than 1lb, and she went home without even needing oxygen support. I last saw her at 5 years old and aside from having a muscle delay on one side (struggled with fine motor grip but doing physio) her mum said you'd never know she was a prem.

Do you know your numbers for kidney and liver function. Even the basic ones being if they've categorised you as spilling +1,+2, +3 or +4 protein? Have they done steroid injections (they aim to do these 24 hours apart when your numbers look like you're likely to deliver in the next week, that's their optimum window). Honestly the tests do show them a heck of a lot, but how they are reacting to those tests can tell you as the patient a lot more. If they haven't done steroids they don't seem anything that makes them think you're at imminent risk of delivery. They would do these even if you were considering termination because they make such a huge difference to lung function that it keeps both options open at no risk. My favourite NICU consultant once told me 'don't panic unless you see me panicking' and he was right, if the doctors aren't running, things aren't dire.

I developed hypertension of pregnancy at 12 weeks, progressed to pre-e by 19 weeks. I had scans 3x a week until 23 weeks at which point I was admitted with +3 protein. I was on max labetalol by 18 weeks, had also maxed the nifedipine by 24 weeks and topped out the methyldopa by 27 weeks. We had nothing left to throw at it at that point and I was still 185/145. We did twice daily scans of the flow through the cord for all 5 weeks to check for any reverse flow which would have meant the baby had to come out straight away. They brought med students in just to chat to me because none of them had experienced someone on such high doses and still tracking at such a high bp. I hung on there until 27+6 at which point I progressed to +4 and HELLP syndrome, however they were watching me like a hawk with me being admitted so delivered within a few hours. Baby was the size of a 22 weeker, below the bottom of the centile chart, spent 101 days in hospital, came home on oxygen, and is now 11 years old and absolutely fine. The fact your baby's head size is staying on track is a very good sign.

In regards to your safety you're in the best place. My consultant told me in his 40 years in obs & gyne (major trauma centre, level 3 nicu) he had only lost one patient to pre-e, and that was a patient who had declined all scans and midwife checks and was brought in unconcious after having a seizure at home. The ones being monitored in hospital he's not scared for precisely because they keep such a close eye on them.

After my first pregnancy I had a full blood panel to check for underlying conditions such as clotting disorders which are associated with an increased pre-e risk but nothing was found. I had pre-conception councelling and spent a long time talking to the pre-eclampsia foundation, because I developed pre-e before 28 weeks both my consultant and the foundation told me my chance of getting it again was over 95%, and about 80% that would be before 30 weeks. Second pregnancy I sent 4xdaily readings to the hospital and had home urine tests daily. I was on aspirin and calcium from day 1 (some docs won't start aspirin until 12 weeks). Aspirin was explained to me as it only helps about 5% of women, but for whatever reason in those 5% it's a pre-e miracle drug, for the rest it does nothing. From 20 weeks we did twice weekly scans. Again I had the huge BP rise and ended up maxed on all 3 meds by 26 weeks, however I didn't actually develop pre-e or HELLP that time, what happened was one of the scans showed the high doses of meds had caused the cord flow to deteriorate and they had him out at 29+1 when I felt absolutely fine, but he came out again the size of a 23 weeker.

My sister in law developed pre-e with +1 protein at 21 weeks, +2 at 24 weeks and then it just stopped. Her test showed she was very likely to need to deliver within 2 weeks but again she didn't. They monitored twice a week but it never went further, her baby was born by scheduled c-section at 38 weeks, just over 5lbs so certainly on the small side but fine. Went home within 24 hours.

What you're going through is scary, very scary and I wish any of us could make it better for you. Any decision right now feels impossible and it's horrific not knowing how to make it better or what to do for the best. However the survival and vitaly the healthy survival stats for 23 and 24 weekers have come on so so far over the last few years, but until you've been in the preemie world it just sounds impossibly premature.

Alongside all of this there is of course the raised chance of disability with an early prem, more so than a term birth. But it's by no means a guarantee, and of my group of 8 mum friends from NCT the two with children with severe disabilities were both born at term. Babies don't come with a guarantee.

I don't actually think it's a decision you'll need to make, but I hope your tests today are reassuring and you find a doctor who is willing to give you the numbers that can help you feel more secure.

mapa289 · 31/07/2023 19:07

Shelby2010 · 31/07/2023 19:03

I hope this question doesn’t come out the wrong way, but will it make a material difference in terms of maternity rights if the loss of the baby is counted as a neonatal death rather than a termination? My understanding is that after 24wks you will be entitled to full maternity leave & pay - you may need time to recover & grieve, without pressure to go back to work too soon.

I am sorry you are going through this.

I have thought about this but thank you for raising it. Fortunately I have an incredible workplace who have been so flexible and supportive through all this and at the moment I'm on full pay until I'm ready to come back in the next 4-6 weeks.

OP posts:
stealtheatingtunnocks · 31/07/2023 19:11

I know of a similar situation. The baby spent weeks in NICU which was a lonely place for the parents as the other parents were all totally wrapped up with their own family issues and left either with or without their babies - she said it was traumatic to be left behind and to see tragedy
daily.

the baby did fine, precocious child who was funny and bright at primary but now she is a teenager her social awkwardness is crippling and she has mental health problems.

There is no way of knowing if that is coincidental but she had a small stroke as an infant and needed a shunt for hydrocephalus so, who knows?

her mum wonders privately if they did the right thing, whether

JenWillsiam · 31/07/2023 19:12

CatkinToadflax · 31/07/2023 18:53

I completely agree. I posted above about a family friend who insists she was born at 24 weeks…. and has just celebrated her 100th birthday. She never mentioned this until my son was born at 24 weeks. Bless her, she’s a lovely lady, and I don’t doubt that she was born prematurely, but I simply don’t see how this can have been possible.

The number of people who claim they know someone who was born exceptionally early a very long time ago and is “over 6ft tall and they’re absolutely fine!” astounds me. I have heard so many of these comments over the years. It’s certainly very different to my own experience as the parent of a 24 week baby, and of the other parents I know whose children are in the same situation. My son has complex disabilities. He will almost certainly never live independently. Every single one of the 24 week babies I know has some form of disability, ranging from mild to severe.

As I said above, I really don’t mean to upset you OP - but on the other hand, as a parent who stood and watched my son through an incredibly long and horrible and unpredictable journey, and is there to support him every day of his life, I feel that the “6ft tall and absolutely fine!” comments need balancing with lived parental experience.

I totally agree. Not only does it give you hope that isn’t reflective of reality it creates a circle of feelings of failure. Sometimes it works out. Often it does not. And that’s entirely luck.

UneasyMe · 31/07/2023 19:13

VikingsandDragons · 31/07/2023 19:06

I know there are people saying not to advise medically, but some of us have been down your road so I'm going to pitch in my story because honestly I'm livid that anyone has suggested termination to a vulnerable and scared woman with a wanted pregnancy at this stage due to pre-e unless it is very rapidly progressing and the life of the mother is currently at risk which you've not indicated yours is (and frankly if you're posting and being left to make a decision it seems less likely). You do not need the extra stress and if you go on facebook and search for parents of premature baby groups you'll see that there are scores and scores of 23 weekers born small for dates who are thriving. The baby in the incubator next to ours was born at 425g, less than 1lb, and she went home without even needing oxygen support. I last saw her at 5 years old and aside from having a muscle delay on one side (struggled with fine motor grip but doing physio) her mum said you'd never know she was a prem.

Do you know your numbers for kidney and liver function. Even the basic ones being if they've categorised you as spilling +1,+2, +3 or +4 protein? Have they done steroid injections (they aim to do these 24 hours apart when your numbers look like you're likely to deliver in the next week, that's their optimum window). Honestly the tests do show them a heck of a lot, but how they are reacting to those tests can tell you as the patient a lot more. If they haven't done steroids they don't seem anything that makes them think you're at imminent risk of delivery. They would do these even if you were considering termination because they make such a huge difference to lung function that it keeps both options open at no risk. My favourite NICU consultant once told me 'don't panic unless you see me panicking' and he was right, if the doctors aren't running, things aren't dire.

I developed hypertension of pregnancy at 12 weeks, progressed to pre-e by 19 weeks. I had scans 3x a week until 23 weeks at which point I was admitted with +3 protein. I was on max labetalol by 18 weeks, had also maxed the nifedipine by 24 weeks and topped out the methyldopa by 27 weeks. We had nothing left to throw at it at that point and I was still 185/145. We did twice daily scans of the flow through the cord for all 5 weeks to check for any reverse flow which would have meant the baby had to come out straight away. They brought med students in just to chat to me because none of them had experienced someone on such high doses and still tracking at such a high bp. I hung on there until 27+6 at which point I progressed to +4 and HELLP syndrome, however they were watching me like a hawk with me being admitted so delivered within a few hours. Baby was the size of a 22 weeker, below the bottom of the centile chart, spent 101 days in hospital, came home on oxygen, and is now 11 years old and absolutely fine. The fact your baby's head size is staying on track is a very good sign.

In regards to your safety you're in the best place. My consultant told me in his 40 years in obs & gyne (major trauma centre, level 3 nicu) he had only lost one patient to pre-e, and that was a patient who had declined all scans and midwife checks and was brought in unconcious after having a seizure at home. The ones being monitored in hospital he's not scared for precisely because they keep such a close eye on them.

After my first pregnancy I had a full blood panel to check for underlying conditions such as clotting disorders which are associated with an increased pre-e risk but nothing was found. I had pre-conception councelling and spent a long time talking to the pre-eclampsia foundation, because I developed pre-e before 28 weeks both my consultant and the foundation told me my chance of getting it again was over 95%, and about 80% that would be before 30 weeks. Second pregnancy I sent 4xdaily readings to the hospital and had home urine tests daily. I was on aspirin and calcium from day 1 (some docs won't start aspirin until 12 weeks). Aspirin was explained to me as it only helps about 5% of women, but for whatever reason in those 5% it's a pre-e miracle drug, for the rest it does nothing. From 20 weeks we did twice weekly scans. Again I had the huge BP rise and ended up maxed on all 3 meds by 26 weeks, however I didn't actually develop pre-e or HELLP that time, what happened was one of the scans showed the high doses of meds had caused the cord flow to deteriorate and they had him out at 29+1 when I felt absolutely fine, but he came out again the size of a 23 weeker.

My sister in law developed pre-e with +1 protein at 21 weeks, +2 at 24 weeks and then it just stopped. Her test showed she was very likely to need to deliver within 2 weeks but again she didn't. They monitored twice a week but it never went further, her baby was born by scheduled c-section at 38 weeks, just over 5lbs so certainly on the small side but fine. Went home within 24 hours.

What you're going through is scary, very scary and I wish any of us could make it better for you. Any decision right now feels impossible and it's horrific not knowing how to make it better or what to do for the best. However the survival and vitaly the healthy survival stats for 23 and 24 weekers have come on so so far over the last few years, but until you've been in the preemie world it just sounds impossibly premature.

Alongside all of this there is of course the raised chance of disability with an early prem, more so than a term birth. But it's by no means a guarantee, and of my group of 8 mum friends from NCT the two with children with severe disabilities were both born at term. Babies don't come with a guarantee.

I don't actually think it's a decision you'll need to make, but I hope your tests today are reassuring and you find a doctor who is willing to give you the numbers that can help you feel more secure.

Great post. Similar experience here. OP, the doctors will prioritise your health over the baby’s. They won’t let anything happen to you. Please don’t let that side of things be the deciding factor.

mapa289 · 31/07/2023 19:14

VikingsandDragons · 31/07/2023 19:06

I know there are people saying not to advise medically, but some of us have been down your road so I'm going to pitch in my story because honestly I'm livid that anyone has suggested termination to a vulnerable and scared woman with a wanted pregnancy at this stage due to pre-e unless it is very rapidly progressing and the life of the mother is currently at risk which you've not indicated yours is (and frankly if you're posting and being left to make a decision it seems less likely). You do not need the extra stress and if you go on facebook and search for parents of premature baby groups you'll see that there are scores and scores of 23 weekers born small for dates who are thriving. The baby in the incubator next to ours was born at 425g, less than 1lb, and she went home without even needing oxygen support. I last saw her at 5 years old and aside from having a muscle delay on one side (struggled with fine motor grip but doing physio) her mum said you'd never know she was a prem.

Do you know your numbers for kidney and liver function. Even the basic ones being if they've categorised you as spilling +1,+2, +3 or +4 protein? Have they done steroid injections (they aim to do these 24 hours apart when your numbers look like you're likely to deliver in the next week, that's their optimum window). Honestly the tests do show them a heck of a lot, but how they are reacting to those tests can tell you as the patient a lot more. If they haven't done steroids they don't seem anything that makes them think you're at imminent risk of delivery. They would do these even if you were considering termination because they make such a huge difference to lung function that it keeps both options open at no risk. My favourite NICU consultant once told me 'don't panic unless you see me panicking' and he was right, if the doctors aren't running, things aren't dire.

I developed hypertension of pregnancy at 12 weeks, progressed to pre-e by 19 weeks. I had scans 3x a week until 23 weeks at which point I was admitted with +3 protein. I was on max labetalol by 18 weeks, had also maxed the nifedipine by 24 weeks and topped out the methyldopa by 27 weeks. We had nothing left to throw at it at that point and I was still 185/145. We did twice daily scans of the flow through the cord for all 5 weeks to check for any reverse flow which would have meant the baby had to come out straight away. They brought med students in just to chat to me because none of them had experienced someone on such high doses and still tracking at such a high bp. I hung on there until 27+6 at which point I progressed to +4 and HELLP syndrome, however they were watching me like a hawk with me being admitted so delivered within a few hours. Baby was the size of a 22 weeker, below the bottom of the centile chart, spent 101 days in hospital, came home on oxygen, and is now 11 years old and absolutely fine. The fact your baby's head size is staying on track is a very good sign.

In regards to your safety you're in the best place. My consultant told me in his 40 years in obs & gyne (major trauma centre, level 3 nicu) he had only lost one patient to pre-e, and that was a patient who had declined all scans and midwife checks and was brought in unconcious after having a seizure at home. The ones being monitored in hospital he's not scared for precisely because they keep such a close eye on them.

After my first pregnancy I had a full blood panel to check for underlying conditions such as clotting disorders which are associated with an increased pre-e risk but nothing was found. I had pre-conception councelling and spent a long time talking to the pre-eclampsia foundation, because I developed pre-e before 28 weeks both my consultant and the foundation told me my chance of getting it again was over 95%, and about 80% that would be before 30 weeks. Second pregnancy I sent 4xdaily readings to the hospital and had home urine tests daily. I was on aspirin and calcium from day 1 (some docs won't start aspirin until 12 weeks). Aspirin was explained to me as it only helps about 5% of women, but for whatever reason in those 5% it's a pre-e miracle drug, for the rest it does nothing. From 20 weeks we did twice weekly scans. Again I had the huge BP rise and ended up maxed on all 3 meds by 26 weeks, however I didn't actually develop pre-e or HELLP that time, what happened was one of the scans showed the high doses of meds had caused the cord flow to deteriorate and they had him out at 29+1 when I felt absolutely fine, but he came out again the size of a 23 weeker.

My sister in law developed pre-e with +1 protein at 21 weeks, +2 at 24 weeks and then it just stopped. Her test showed she was very likely to need to deliver within 2 weeks but again she didn't. They monitored twice a week but it never went further, her baby was born by scheduled c-section at 38 weeks, just over 5lbs so certainly on the small side but fine. Went home within 24 hours.

What you're going through is scary, very scary and I wish any of us could make it better for you. Any decision right now feels impossible and it's horrific not knowing how to make it better or what to do for the best. However the survival and vitaly the healthy survival stats for 23 and 24 weekers have come on so so far over the last few years, but until you've been in the preemie world it just sounds impossibly premature.

Alongside all of this there is of course the raised chance of disability with an early prem, more so than a term birth. But it's by no means a guarantee, and of my group of 8 mum friends from NCT the two with children with severe disabilities were both born at term. Babies don't come with a guarantee.

I don't actually think it's a decision you'll need to make, but I hope your tests today are reassuring and you find a doctor who is willing to give you the numbers that can help you feel more secure.

I am already +4 and have been for some time. I'm not very symptomatic at the moment but they are just starting to be considered about kidney function. This is a great story and I'm really pleased that it worked out for you and the people you know, but as we've been discussing it's just not the case for everyone. It's why I'd like more information as to what the potential outcomes might be.

I don't know how to make a choice to continue when it's potentially so risky for the baby, or not to continue when I'm being told that I'm at risk too.

OP posts:
stealtheatingtunnocks · 31/07/2023 19:14

Sorry, posted too soon. Whether the girl’s struggles are becaise the mum was traumatised, whether they couldn’t bond because of the prematurity, whether they have spoiled her, all the usual things parents with children who struggle will go over and over in their minds.

my point, I think, is that NICU for 20 weeks was a very hard experience and even though she id a “6 foot success story” they do have ongoing challenges which may or may not be related to prematurity.

they love their girl, of course, but it is not family life as they expected. They are grateful and also traumatised.

JenWillsiam · 31/07/2023 19:15

VikingsandDragons · 31/07/2023 19:06

I know there are people saying not to advise medically, but some of us have been down your road so I'm going to pitch in my story because honestly I'm livid that anyone has suggested termination to a vulnerable and scared woman with a wanted pregnancy at this stage due to pre-e unless it is very rapidly progressing and the life of the mother is currently at risk which you've not indicated yours is (and frankly if you're posting and being left to make a decision it seems less likely). You do not need the extra stress and if you go on facebook and search for parents of premature baby groups you'll see that there are scores and scores of 23 weekers born small for dates who are thriving. The baby in the incubator next to ours was born at 425g, less than 1lb, and she went home without even needing oxygen support. I last saw her at 5 years old and aside from having a muscle delay on one side (struggled with fine motor grip but doing physio) her mum said you'd never know she was a prem.

Do you know your numbers for kidney and liver function. Even the basic ones being if they've categorised you as spilling +1,+2, +3 or +4 protein? Have they done steroid injections (they aim to do these 24 hours apart when your numbers look like you're likely to deliver in the next week, that's their optimum window). Honestly the tests do show them a heck of a lot, but how they are reacting to those tests can tell you as the patient a lot more. If they haven't done steroids they don't seem anything that makes them think you're at imminent risk of delivery. They would do these even if you were considering termination because they make such a huge difference to lung function that it keeps both options open at no risk. My favourite NICU consultant once told me 'don't panic unless you see me panicking' and he was right, if the doctors aren't running, things aren't dire.

I developed hypertension of pregnancy at 12 weeks, progressed to pre-e by 19 weeks. I had scans 3x a week until 23 weeks at which point I was admitted with +3 protein. I was on max labetalol by 18 weeks, had also maxed the nifedipine by 24 weeks and topped out the methyldopa by 27 weeks. We had nothing left to throw at it at that point and I was still 185/145. We did twice daily scans of the flow through the cord for all 5 weeks to check for any reverse flow which would have meant the baby had to come out straight away. They brought med students in just to chat to me because none of them had experienced someone on such high doses and still tracking at such a high bp. I hung on there until 27+6 at which point I progressed to +4 and HELLP syndrome, however they were watching me like a hawk with me being admitted so delivered within a few hours. Baby was the size of a 22 weeker, below the bottom of the centile chart, spent 101 days in hospital, came home on oxygen, and is now 11 years old and absolutely fine. The fact your baby's head size is staying on track is a very good sign.

In regards to your safety you're in the best place. My consultant told me in his 40 years in obs & gyne (major trauma centre, level 3 nicu) he had only lost one patient to pre-e, and that was a patient who had declined all scans and midwife checks and was brought in unconcious after having a seizure at home. The ones being monitored in hospital he's not scared for precisely because they keep such a close eye on them.

After my first pregnancy I had a full blood panel to check for underlying conditions such as clotting disorders which are associated with an increased pre-e risk but nothing was found. I had pre-conception councelling and spent a long time talking to the pre-eclampsia foundation, because I developed pre-e before 28 weeks both my consultant and the foundation told me my chance of getting it again was over 95%, and about 80% that would be before 30 weeks. Second pregnancy I sent 4xdaily readings to the hospital and had home urine tests daily. I was on aspirin and calcium from day 1 (some docs won't start aspirin until 12 weeks). Aspirin was explained to me as it only helps about 5% of women, but for whatever reason in those 5% it's a pre-e miracle drug, for the rest it does nothing. From 20 weeks we did twice weekly scans. Again I had the huge BP rise and ended up maxed on all 3 meds by 26 weeks, however I didn't actually develop pre-e or HELLP that time, what happened was one of the scans showed the high doses of meds had caused the cord flow to deteriorate and they had him out at 29+1 when I felt absolutely fine, but he came out again the size of a 23 weeker.

My sister in law developed pre-e with +1 protein at 21 weeks, +2 at 24 weeks and then it just stopped. Her test showed she was very likely to need to deliver within 2 weeks but again she didn't. They monitored twice a week but it never went further, her baby was born by scheduled c-section at 38 weeks, just over 5lbs so certainly on the small side but fine. Went home within 24 hours.

What you're going through is scary, very scary and I wish any of us could make it better for you. Any decision right now feels impossible and it's horrific not knowing how to make it better or what to do for the best. However the survival and vitaly the healthy survival stats for 23 and 24 weekers have come on so so far over the last few years, but until you've been in the preemie world it just sounds impossibly premature.

Alongside all of this there is of course the raised chance of disability with an early prem, more so than a term birth. But it's by no means a guarantee, and of my group of 8 mum friends from NCT the two with children with severe disabilities were both born at term. Babies don't come with a guarantee.

I don't actually think it's a decision you'll need to make, but I hope your tests today are reassuring and you find a doctor who is willing to give you the numbers that can help you feel more secure.

Always always read the full thread before commenting on a thread like this. Always.

I am sorry you had such a hard time.

mapa289 · 31/07/2023 19:18

I may step away from the thread as we move forward with this but thank you very much for everyone's input and hand holds. It's really appreciated.

OP posts:
ChateauMargaux · 31/07/2023 19:19

You are in a really really difficult position that most of us will thankfully never face. No one can 100% say what they would do in your position because no one has ever been 100% in your situation. Whatever the outcome, your baby is loved by her / his mother and father and nothing will ever change that.

If there is a specialist midwife who supports difficult pregnancies, you can ask to have their support.. or a local specialist local doula.

38andtrying · 31/07/2023 19:19

@mapa289 no advice here, you will do what is best for you and your family, just wanted to say im so sorry you have had this news, what horrible decisions and options you have, every one of them difficult. Hoping for a positive outcome for you, you are stronger than you know.

CatkinToadflax · 31/07/2023 19:21

mapa289 · 31/07/2023 19:18

I may step away from the thread as we move forward with this but thank you very much for everyone's input and hand holds. It's really appreciated.

Flowers Flowers Flowers

Yummymummy2020 · 31/07/2023 19:21

I got to 37 weeks after about ten admissions and at each one I was told today was the day I would deliver but they always got me out of a hole. I had issues from 20 weeks on the dot. My liver really started to act up at the end though and it got that there was no option or leeway at all because I was really getting poorly and honestly my body was all but giving up. I remember being particularly bad about about 26 weeks and feeling awful and it was that the meds had pretty much stopped working at the second last increment of dosage I could have but they did manage to keep me going on the higher dosage then till it eventually just got too much at the end. I was signed off work and pretty much told to rest as much as possible and had a ton of monitoring, most of which was as an in patient. But I know I was extremely lucky to have not been worse off or the baby. It also took a great toll on me mentally but I’m glad how things worked out. I remember really well the terror of it at the time. And really I don’t think they knew what to do with me a lot of the time it was always just watching and waiting. They seemed to have quite a high tolerance for risk too in my clinic even though I was in maternal medicine, they definitely pushed the limits a lot with what was recommended to be done. I could have had another person say the baby was to be delivered immediately much earlier and they would have been right to do it aswell. I guess I got really lucky between the meds managing it even if barely till so near the end and the risks doctors took paying off. I will say though, my liver has never recovered. It’s ok, but I need six monthly checks and have constant elevations. This was due to the pre eclampsia I was told so I don’t know how I will fare out down the line. I have had a baby since though and her pregnancy was great, pregnant again now and so far so good no pre eclampsia (touch wood) but I’m watched closely for it.

Oowoo · 31/07/2023 19:26

Gosh OP I can’t even begin to imagine how hard this must be for you and your family right now, especially so much harder because you feel you need time for decisions as big as these but it sounds like you’re struggling with that too.
just know that whatever your decision is ,it is the right one, you can only make a decision on the information you’ve been given at the time. Whatever decision you make there will be days where you doubt it and wonder the “what ifs”, but just know that whatever decision is the right one.
It is impossible to predict the outcome of either decision, if only we could, but life is so unpredictable.

I am sending you so much love and support, it is such a scary position to be in to have a life threatening condition and probably feeling quite unwell and having to make life changing decisions. Be so proud of yourself for reaching out, trust yourself and your decisions and never be afraid to reach out to support services x

Keepitrealnomists · 31/07/2023 19:29

My goodness, you poor poppet. Massive handhold 🤝

Katela18 · 31/07/2023 19:31

Hi OP

I had pre -e in my first pregnancy, similar to you very high PiU and uncontrolled BP even with meds but I was asymptomatic.

Being honest with you, things happened fairly rapidly, I was about 6 days from diagnosis to delivery of baby via emergency section. Even on the day of my section I still had 0 symptoms outside of the test results

I was lucky in that i was 32 weeks so statistically my baby had higher chances however the birth of a premature baby is traumatising and a NICU stay is heartbreaking, traumatic, draining etc.

It was actually this that made me struggle with the idea of a second baby rather than the idea of pre e again. I genuinely didn't think I could do another NICU stay. So it really is ok and very logical that this is something you are taking into consideration when making your decision.

Statistically you are slightly more likely to have pre e again, but it's not much (I think maybe 8%?). I did not have pre e in second pregnancy, but was monitored from the off and started aspirin, also had a home bp monitor.

I understand what you are saying about the lack of info, we found the drs very non committal and it felt like no one wanted to be straight with us which is really frustrating. I hope this ends out well for you, which ever way you decide to go xx

Kay286 · 31/07/2023 19:32

So sorry op what an incredibly hard decision to make. I can’t give any personal experience but I have a friend who had an extremely prem baby and is now 9 but has severe life long and life changing disabilities. Cannot walk , talk, eat (tube fed) incontinent. Constantly hospitalilzed with multiple urgent brain surgeries …. Is has of course changed their life beyond recognition. They love her dearly of course …. But I would not want that for myself (or my child) .
Of course the baby could be perfectly healthy I guess it’s weighing up the risk if you can except the worst case scenario/againist if you didn’t have the baby and did not get a chance again.
x

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