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.

Susan Hill's book "Family" comes to mind in situations like this. She had a very premature daughter in the early 1980s who lived for five weeks only. I recall her saying that every day her baby was in intensive care she was desperate for her to survive, but with hindsight she wished that her daughter hadn't been put through so much, particularly given that her chances were never good. Obviously medical science has come on a great deal since then, but that has always stuck in my mind.

The problem with that is today's results. There are indications that OP's kidney function is being affected, and the baby's growth rate has slowed to under the 5th centile, so that she is currently only at around the 19 weeks growth stage. So doing nothing for OP is not an option, the hospital has to continue to try to treat her high blood pressure and prevent kidney damage. So far as the baby is concerned, it sounds as if the outcome of doing nothing is that the growth rate will continue to slow and the situation will again get more dangerous. I can see exactly why this is such a difficult dilemma for you, OP, and I'm sorry I can't offer more than a virtual handhold.

Sending love and support OP, what an awful position to be in. I can’t imagine the heartbreak you feel

🌻

@WantingToEducate that's my exact position, but every time DH and I think we've made a decision we're told to just take a deep breath and see what happens with the next round of bloods. I'm sure a lot of people would be able to but I just don't think we can go on indefinitely waiting. He's extremely worried about my health and the long-term impacts too. I'm so focused on the baby it does help to have someone remind me that I'm important as well.

Our first question was could we potentially get to 26 weeks, and they said they have no way of predicting that. Then we asked what would happen if I delivered at 24 weeks and they told us today that baby would be more like a 20 week old, so odds are even lower than the standard figures for 24 weeks. There's always a a chance, however slim, that baby would be okay after some time in NICU but nobody knows until it happens.

@mapa289 Yes the PE and FGR combined sounds so difficult to assess. In our situation my placenta didn't form correctly so the blood and nutrient supply between me and the baby was impaired and getting increasingly worse. There was no question that it would get to the stage where it had reduced so much that the baby was in danger - they just weren't sure when. I had twice weekly scans and almost daily dopplers. A couple of times the blood flow improved but mostly it got progressively worse. In the end, my waters broke suddenly (on a day a consultant had said the baby would be in there for a while longer) so the planned section that had been discussed became an emergency one.

However, apart from some related high blood pressure my own health was generally ok and the extra stress that the possibility of severe eclampsia or HELLP must bring is of course another impossible uncertainty to deal with.

Your health is the most important thing. Please think of yourself and all those who love you. I'm so sorry you find yourself in this awful situation. X

I’m so sorry you’re in this position. Whatever you decide be kind to yourselves.

Hi OP, sorry you are having such a rough time. I’ve had PE 3 times, each progressively worse. Only you can decide what to do in this situation.

In case my experience is helpful….Dd1 was in nicu for 4 months (unrelated issues). We met a number of 24 weekers, and those that had had the req steroids did well (although had long nicu stays).

In my 2nd pregnancy, we were told that DT1 may not survive and were given the option to terminate until 32 weeks. Our consultant said she couldn’t promise we would bring home 2 babies, which was terrifying but we carried on. They were both healthy.

It’s so hard to make a call in these situations, and whatever you decide you’ll always wonder. But just remember the ‘what ifs’. Right at the end of my twin pregnancy, when we weren’t sure if DT1 would survive, I remember a midwife telling me to believe in hope, and think about what if it works out.

Sending you a handhold for whatever you decide.

Frankly I dont believe some of the stories on here, pro lifers will tell you anything. My (second hand) experience of a very premature baby with other pregnancy issues is that apart from the long stay in NICU the family had an extremely difficult few years. The baby was in and out of hospital all the time and several times it seemed they wouldnt survive. They made it through and their disabilities are relatively minor but eyesight problems are common with premmies. If fortunate it is just restricted field of view. Baby's mother has never returned to work. Baby (I dont want to reveal too much so no sex mentioned) is now doing reasonably well at school, hopefully will still be able to drive and live a near normal life. Other parents with similar prem babies had to deal with their death or more severe disability.

It's a horribly difficult decision to have to make. Speak to some of the charities where you can be sure the people either have been through this themselves or have counselled others.

What a tough position to be in. I hope you can get some good support.

Op, what an awful situation and choice for you to grapple with. I’m pregnant right now and just want you to know you have my full empathy. I understand what you and your husband are feeling about the uncertainty being so hard to deal with, as often uncertainty causes severe anxiety and it can feel like a final decision may feel better as it’s then fully decided and at that point you don’t have to keep wondering about what if.
I really think your care team need to get on the same page and you should ask them for a consistent message as you’re getting conflicting information which is making a challenging decision even harder. Ask them for the truth on how severely your health is being impacted and if you will even be able to be pregnant again. I have a friend who had kidney damage in one pregnancy and was not allowed to get pregnant again. Do your drs think it makes more sense to try and see wha happens with this pregnancy vs trying again, or is the restricted growth likely to worsen?

Op, I also had early onset pre eclampsia. I did make it through with a ridiculous amount of meds, mainly labetalol which did stop working eventually and my liver ect started to go. Baby was in nicu and I was induced but she is there now and a perfectly fine pre schooler. I think at the point you are at now, I agree with the other poster regarding babies doing ok delivered at that point. It’s a scary time, and I used to dread every urine test and blood pressure check because it was always touch and go with when I would have to deliver, constantly an in patient ect. But it worked out in the end!

It’s not pro life to let OP that many babies have been born and survived at 24 weeks, some even at 23 weeks. There is a reason it’s the legal limit for abortion and the upper limit for abortions globally, unless in cases of severe medical issues.

Tommy's has information on premature babies at 23 weeks that might be of use. It has some information that may be hard to read, just to warn you.

https://www.tommys.org/pregnancy-information/premature-birth/my-premature-babys-development-womb-week-23

How far did you make it? I'm already almost at capacity for my two meds so I think there's a concern that if/when things worsen I can't do much more except an IV.

I’m not going to share my story because it wouldn’t help but I’ve been where you are and I’m sending you all the support and positive vibes possible. My thoughts and hopes are with you that all goes as well for all three of you as it possibly can. Stay strong, sister.

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…

Yes, but OP’s baby is more like 19 weeks in terms of its gestational development, and from what OP has said I get the impression that the baby’s growth is going to continue to slow.

People keep talking about all the babies who have been fine when born at 24+ weeks gestation, some have even been talking about their premature babies born at 30-34 weeks gestation, but that is not comparable to the OP’s circumstances at all.

People routinely have bloods and scans and Amnios during pregnancy to detect any life limiting conditions or any conditions that would severely impair the child’s quality of life for the entirety of its life, and sometimes people abort due to this because they don’t want to inflict that kind of future on their child.

I’m not saying OP has to do anything, but she certainly shouldn’t be criticised for thinking about the potential long-term outcome for her baby and taking that into consideration when she makes any decisions.

Nothing to offer but a handhold and love, OP, and my hopes for the best possible outcome for you and your baby.❤

I'm so sorry you find yourself in this position.
I had my ds2 at 24 weeks to the day, I risked my life to do so and was told many times to terminate having been hospitalised since 16 weeks and I did seriously consider it. My son was tiny, and in poor condition. Long story short he had a fight on his hands, we both did, but it all turned out fine.
I would say sadly confusing information is par for the course, everyone has different opinions and it's not an exact science. Listen to you gut and consider what you can and cannot live with. I got lucky, not everyone does.
I wish you all the best.

Sending best wishes and a hand hold x

This is a very different situation. When I was pregnant with my daughter I was told at 9 weeks I had accreta. By 16 weeks I had percreta. Odds of baby surviving were low because much like you even if I got to the stage where baby was technically viable the growth was slow. She wasn’t a fat thriving baby arriving early. The complication also meant I was at significant risk, it’s got one of the highest maternal mortality rates of all pregnancy complications. I was much like you and my husband like yours. By 22 weeks the decision was clear, she was still too tiny to survive and the risk to me was increasing exponentially. It was awful. Really awful. But there was nothing we could do to fix it or avoid it. However hard we tried.

I am telling you this because yes, with all pregnancy complications there are positive stories. But there are also women like me where it just doesn’t work out that way. You are not and will not be alone. There is a huge amount of support and there is a future.

I am so so sorry.

Sending you love ❤. Sorry!

I’m so sorry OP, I don’t have any experience of this. After reading your story I couldn’t not wish you my very best wishes. Take care