Any much needed advice from mums of babies born early due to placental insufficiency?

[Millymolliemandy]

Hi,

We had a very worrying appointment with our consultant yesterday at 26 + 5 weeks, where we were told that the placenta is not working properly and we should prepare ourselves for probable early delivery by c-section. We have another scan/doppler in a week.

We did have some pre-warning that this could happen with a very low PAPP A reading at 12 weeks, baby measuring small at 20 weeks, growth and doppler at 23 weeks where baby was still small but placenta working on the high end of the normal range.

I am desperately trying not to worry myself sick and instead prepare ourselves in the best possible way for baby coming quite soon, if the placenta function decreases over the coming weeks.

I wonder if anyone can give me any practical advice about preparing for a prem baby and a c-section. For some reason, the thought of a c-section is making me particularly upset as I had really hoped for as natural a birth as possible, and I am also desperately keen to breastfeed.

Sorry for the long ramble, but would love to hear from anyone who has found themselves in a similar situation.

Congratulations millymollymandy, lovely news, although it sounds like you've been through the wringer. Keep us posted as to how Clementine progresses.

sixer there is another thread that is fairly recent, titled IUGR and OP by hsmom. I don't know if you might have searched and read it already but it has some interesting stories on there, including mine, which I have copied below. I hope that it provides you with some encouragement. Good luck with your little one, keep up the singing because you never know ! I think when they say "adaptations" they mean where head measurements tend to stay normal, the other ones start lagging behind, which is a "brain preservation" response that ensures that the most important organ gets the most nutrients to grow.

My 12wk scan with DS2 was perfectly normal, but at 20 weeks only his head measurement (barely) made it on to the chart, he seemed to be about 3 weeks behind. Dopplers were normal except for the reverse flow, which was absent, the significance of which no one seemed to be sure of at any time.

We were told the most likely explanation (by Prof Nicolaides team at Harris at KCH) was severe, early onset IUGR and the outlook was poor. His estimated weight was 120g and as you know, the target for delivery into scbu with a good outcome is 28wks and 600g....which seemed such a long way away. We had amnio, TORCH screens, achondroplasia tests done, all came back clear so we then continued to scan every two weeks (and torture ourselves with what awful conditions might be causing the growth restriction-please try not to do that too!). As time progressed, DS2 seemed to defy expectations because he continued to grow at normal velocity, following a standard curve but right at the bottom, or below the chart. The prof suggested that maybe there had been some damage to placenta early on but that it had repaired itself..some amazing things can happen.

We made it to 37 weeks, at which point the fluid was low, so they induced me. DS was born weighing 4lbs [1.95kg] but fine, no need for scbu, just 3 nights in hospital to get his blood sugars up and treat a bit of jaundice with
light blanket. He is still, at 16m and approx 9kg just below the 0.4th centile but perfectly normal, developmentally on track (chatty, says mama, dada, sibling names, feeding himself, walking). He is the happiest baby I have ever met and so cute. Although we hope he will catch up in size, after such a stressful and seemingly never ending pregnancy we feel so lucky to have him. I really hope you have a similar story to tell too, I will be thinking of you and wishing you well.

Congratulations on the birth of baby Clementine, lovely to know all is well. One day soon you'll be bringing her home, and you can have her all to yourself. How are you feeling? Please look after yourself, and take time to come to terms with everything, you've been through alot.
My little boy is now nearly 21 months and has recently started walking, after 18 months of physio we have now been successfully discharged! He's also learning new words every day,its taken a while but things are starting to fall into place. Please keep posting xx

MillyMollyMandy, it's so lovely to hear about Clementine - it sounds like she is doing really well now. I can well imagine how your routine has been taken over the SCBU, so thanks for continuing to post. If she is able to digest breast milk and can have kangaroo care that sounds brilliant, and I'm sure she is stronger by the day. Are you given any indication when she may be able to go home - will she automatically stay until her original due date, or is there some specific milestone she needs to reach?

Sleepwhenidie, as you can imagine, I gobbled up your story with glee! It is such a happy outcome, and your little boy sounds delightful. I think my placenta is unlikely to improve, but your case just goes to show that you never can be sure, and who knows, if my singing could only get a bit more tuneful, it might finally respond!

Next scan is next Tuesday, 17th, so we shall find out more then. In the meantime thank you all for your positive thoughts.

No worries, I will be thinking if you. I don't think my placenta improved, it just didn't deteriorate as dr's expected it to, so that is all you need, keep ticking along as far into last trimester as possible. Good luck xx

Hello sixer, the criteria for going home for our little boy was being able to maintain his own body temperature outside of an incubator, being able to breathe and not having an apnoea alarm for a week, (when premature babies stop breathing, this often happened during feeding and sleeping), weighing about 2kg/5 pounds, and feeding successfully, ie not falling asleep with exhaustion halfway through a feed.
He had a last minute check by a Chief Neurologist to ensure he was generally healthy. We also saw an eye Dr who checked for signs of potential eye problems premature babies are prone to.
This was all achieved roughly when he was due anyway, born late aug, (28 weeks) home mid nov.
good luck for scan next week, please keep posting x

Congratulations MillyMollyMandy, and what a gorgeous name! I'm so glad she is doing well.

sixer glad to hear you are still cooking too, it is fantastic. When I was pregnant I was told my son was favouring head growth over abdomen which I guess is 'adaptations'. His abdomen measured about two weeks behind his head size from what I recall? They said that with severe IUGR a growing baby will favour brain growth over other organs. I thought that was quite amazing although in the very tiny ones it means they are born with very immature guts in particular.

From what I recall he had to breathe, eat and maintain temperature to go home. I think it varies between units. Hopefully you will have a long way to go and a smooth ride when the baby is born. Will be thinking of you.

Oh and just to add, we didn't have time for much screeing but DS was screened for all kinds of scary genetic conditions after birth- all negative. Most IUGR is related to placental insufficiency rather than anything else.

Well, another scan, and we are told that the placenta is "stable". Now 29 + 5, we were given an estimated weight of 889g (and a very angry-looking scan photo, too!). I am going back in 10 days (next Thursday) for the next scan - we are not sure what to read into this, as we understood that if everything was fine we would continue to have fortnightly scans.

But overall we are really pleased. I have to hold back from asking thousands of questions though about what sort of problems there might be in breathing, digesting, etc. Your point about immature guts, Willbean, makes perfect sense - does that mean he will take longer than other babies born at the same gestational age to be able to digest breast milk? And if he was born now, would his eyes be open (as I think they should be at 29 weeks), or shut, as they would be a 25-weeker (which is his equivalent weight)? I am also unsure whether to ask to look around the SCBU, which I've heard have helped others deal with this quite frightening environment. Any insights on this would be very much appreciated.

I think I'm the opposite of some others who have posted, in that I would really like to stay with the FMU, but if I reach 34 weeks I will be expected to go back to my local hospital. I am preparing to do battle if I can, as I really feel alot more confident about the level of expertise at Tooting.

Anyway, sorry about quite a boring post. Lovely news from hsmom today, though!!!

Hi to the ladies on this thread,
I have to say thank you to all of you who post your stories. I am quite reluctant to start/join a thread but am in need of some advice on how to manage my brain over the next few weeks.
We found out on Wednesday at UCLH FMU that our little lady has asymetrical IUGR due to placental insufficiency (sky high resistance in my placenta - thanks a bunch!). I am 24+6 today and she weighed 511g on wednesday so she is far too small/young to do anything with/even consider steroids for lungs. They have said that they cannot predict what will happen (she might die or she might not) but go home, relax and come back in a week for a doppler to check on blood flow. What?? I cannot comprehend where I am going to get the strength to stay sane. Hearing your stories has really helped though. Thank you.

Hey sixer, glad to hear things are still as ok as they can be. You are not far off the magic kilo. I think the more scans the better, I wouldn't read too much into it.

When my son was born he was not fed for about ten days as they suspected infection in his gut. They can give them nutrition intravenously if they are not certain about whether they can tolerate milk. When DS was ready they gave him tiny tiny amounts of expressed breast milk by tube to get some good bacteria into his gut and then slowly built up. You will be encouraged to express because breast milk is much much easier for them to digest than formula.

We did look around the unit before DS was born and we found it helpful. There are also lots of useful leaflets from Bliss that the hospital will probably give you. I should think his eyes would be open if he was born now- DS's were.

I think I would be with you about staying where you feel confident. If I learnt one thing from my experience it was don't be afraid to stand up for you and your baby. Hope you can deliver where you want and go on for a long time yet!

clabsyqueen Sorry you are going through this. WHo is looking after you at UCLH? I had similar problems and DS was born there (27 weeks, 560g). They are AMAZING. The dopplers will tell them a lot more about how things are looking. It was deteriorating dopplers that caused the decision to deliver DS. I'm sure you have been told to monitor movements in the meantime and go in if your little girl is moving less.

Knowing what I do of UCLH, I would think that if they thought things looked very bleak they would have tried to intervene. 500g is not too small for them to help. Having said that I really hope that your baby continues to grow and stays put for many weeks yet. Sorry you are going through this, it is so worrying. I will be thinking of you.

Will bean,
Thanks so much for your reply and reassurance. I'm glued to the screen at the moment in the absence of any other plan of action. Dr Pandya is now our consultant and they were amazing today (dr Fred ushakov esp lovely today) when I went in in a total state about movements. Not what they need I know but I think I'm allowed one mental moment.
Deteriorating dopplers is all i can think about. Didn't think id ever have so much medical knowledge! How is your little boy now?

Hey- glad to be some use. I have been there and I know how it feels. Dr Pandya was the consultant who decided to deliver DS and therefore saved his life. I recall that he didn't have the greatest bedside manner but he is clearly so good at what he does and I had complete confidence in him.

My DS is doing very well. He had a rough ride at the beginning but he's now 21 months, a bit small and some way behind but expected to catch up. I did a lot of talking and singing to him in that horrible time after I knew there was a problem, I thought it might encourage him to grow. Made me feel I was doing something anyway.

I will check back in a bit later on or tomorrow morning. The Bliss website and message boards are a good source of info and support too.

His bedside manner was very direct indeed but I have trust in him. Nice to hear that your little boy is doing ok.

Thank you, WillbeanChariot, for your support! It's great to be able to ask silly questions that I know aren't strictly necessary to ask the Professor at Tooting.

Clabsyqueen, I too was told that nature would have to just take its course once the placental insufficiency was diagnosed - this was at just 21 weeks, and we had to wait until 27 weeks for the next scan, assuming that they would not intervene if things happened sooner. At 21 weeks, the baby had an estimated weight of only 315g (so I think your baby is probably doing better than mine was at 24 weeks!). My placental resistance was, and has remained, extremely high (sum of Pl>2.5, looking back at my notes). But things are now relatively stable, and everyone seems quite optimistic that the pregnancy could continue for a while yet (I'm nearly 30 weeks), and the baby will be over 1kg when it is born. After our 6 weeks of waiting and feeling helpless, I can really sympathise with your feelings at the moment, but you should really take heart from the examples on this forum and elsewhere - chances are, your baby will be fine.

Sixer, wow you've gotten through 9 weeks of sheer hell! I am full of admiration. My PI values are 2.8 and 1.6 (should I add those together to get the sum value that you talk of?) good grief if so! It is so soothing to hear that your situation has stabilised. I have my fingers crossed ours does too. Poor little lady - feels weird to have your body working against something you want more than anything. Best of luck you both. I hope to keep in touch on here.

Have just read back onnthis thread fully and want to say a big congratulations to Millie Molly Mandy. You will no doubt be joining new threads with thevwhole new world you have now entered. I have my fingers crossed clementine is growing well and getting fatter by the day.

My PI values are 2.37 and 2.62, so you are in good company!

It seems I am sixer! When are they planning to deliver your little one? Is there a date they won't go over or does every day count?

Well, it feels quite lonely on this thread at the moment but I'll keep updating anyway just in case there are lurkers like I used to be! Survived 6 sleeps since being told the bad news and with only 1 (unnecessary) panicked visit to the labour ward at 7am. Not bad I reckon. Think I scared a few people on my train at the weekend by sobbing when informed of a delay. Must have thought I was nuts - I will never again judge ladies who lose the plot for apparently no reason! Got 26 week midwife appointment day and I am not letting her come near me with a tape measure. I know my bump is tiny, don't need reminding. Doppler tomorrow at 10am for a placental assessment. Let's hope there's been a miraculous drop in resistance but I'm not holding my breath.

still here, clabsyqueen and thinking of you. you're right, every day inside counts so wishing you all the best for doppler tomorrow. what are the PI values and what do they mean?

Hi efeslight,
The PI values measure the resistance to blood flow in the placenta. Meant to drop as pregnancy progresses to allow rapid exchange of blood and growth. High numbers mean high resistance so fewer nutrients and less growth for baby. Not exactly sure what number would be normal. Think below 1 would be much better. It's a shame you can't get a qualification out of all this knowledge we accumulate in times of trouble. Waiting for my midwife now. The most cheerful lady I've ever seen. I'll soon put paid to that!

Hi again clabsyqueen. Just wanted to wish you luck for tomorrow, I hope to see you back on here with a very dull report! Will be thinking of you.

Just back from FMU at UCH. Not great news but could have been worse. Blood flow in baby slightly less favourable (ductus venous resistance up). Have to go in again on Friday for another Doppler and neonatologist apt. Mr Pandya predicts a decision on delivery will have to be made in the next few weeks (not sure what a few means!). Such a touch and go time to try and decide as she is very low weight for her gestation so although 26 weeks sounds hopeful (we reach that on Saturday) she is actually much smaller than that. 28/9 weeks would make it much easier to decide what to do.

Hi again clabsyqueen I have sent you a PM.

Hi Clabsyqueen, just logging on to see how your appointment went today. What estimated weight have you reached now, and what were your PI readings? Please try not to get down about it - if your baby needed to be taken out now, she could and would be, so your placenta is still doing some good! I am just 4 weeks ahead of you and expecting an imminent decision, so if Mr Pandya is talking about making a decision in another few weeks then you will soon be as far along as me and find things looking surprisingly optimistic.