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.

I'm glad you are being monitored and have some time to prepare for this, i wish you all the very best.

We had a similar problem ,identified at 27 weeks, i went into hospital and had a doppler every other day for a week.

my son was delivered at 28weeks +3 weighing 1pound 11. I tried very hard to express milk using the electrical pumps available in the SCU and we also hired one to use at home, but the milk never really came in any great amount.

But most of the other mums in the unit had more than they needed at the time, so were freezing dozens of bottles to be used later when their baby needed more. I just told myself any of mother's milk (MM they called it) was better than none.

I continued to try to express for the 3 months he was in hospital as he was never really able to latch on, and was too weak to suck, however when he came home, our amazing midwife was able to latch him on in less than 2 weeks. If only this help was given in the unit earlier we might have been successful and been able to establish a flow. I gave up after 5 months, and regret not being able to bf for longer, but many other mothers in the unit did not have this problem.

Having a c-section never really bothered me, they are common and i knew he had to come out as he wasn't able to survive any longer inside. You have lots of time to bond with him later, doing 'kangaroo care' holding him against your skin and letting him smell you, feel your heart beat, breathing, listen to your voice etc.

The environment of a SCU unit is obviously difficult and we visited before to have a look around and try to understand the equipment, tubes, lines etc, so try to visit if possible. maybe take a pen and paper to note down the details given of the special care provided and equipment used. My husband was able to take in some of the details, but i found it hard at the begining to remember what machine did what and what all the measurements displayed on the monitors meant.

For very premature babies their heart rate, pulse, level of oxygen in the blood, blood pressure is constantly monitored and its helpful to understand what all the numbers mean.

I also bought 2 books, 'the premature baby book' and 'your premature baby and child' to refer to, they are helpful/reassurung and scary at first.

my son is now one and a half and doing very well.

best of luck

Thank you so much for your advice. Trying to think straight at the moment is proving a challenge. We have our next scan this Friday - I am terrified that things will have deteriorated and that delivery will be the only option, but it sounds like you had some warning, with more regular dopplers. Was your son able to have steroid injections before he was born?

I think you are right about a visit to SCBU, this is a whole new world and at least it will give us a chance to prepare ourselves. I'm going to ask about this on Friday.

I have contacted a Le Leche advisor and have already been sent a big pile of leaflets on breast feeding a premature baby, which I am reading through.

Did you find you met Mums in similar situations in the SCBU and were able to share information?

I am so pleased to hear your son is doing well. Thanks so much again for taking the time to respond.

Yes, we had a little warning, knew it was going to happen soon but my husband had nipped out for a sandwich and came back to find me gone, straight to theatre!

They did a doppler on Fri night,which wasn't good, said they'd repeat it in the morning and then Sat am found there was almost reverse flow, away from the baby,so he had to come out immediately.

He had been given the steroids during the week in hospital so his lungs had matured a little.
We knew he was going to be small (IUGR), do you know how much yours weighs approx?

Prior to the identification of the problem at 27 weeks, everything was fine and I could still feel him kicking so knew he was still active.
There were some complications, small brain bleed, operation on his lung, infection scares etc, but the care was excellent.

I did talk to some mums, but all this happened abroad so not everyone spoke english, which was obviously quite stressful and isolating.
But we made it!!

Think positive, i'll be thinking of you on friday xx

Hello MMM. I have been there too. I was packed off to hospital after measuring small at a midwife appointment and to cut a long story short DS was born five days later by C section. I second the advice to look around the unit, we did and found it helpful.

I had planned to deliver at a birth centre and was very disappointed to have to have a section but it gave DS a better chance. It was ok and I recovered very quickly. One thing I wish I had known before was that I could choose the music in the operating theatre, you might want to choose some. Also get some big high waisted pants and soft tracky bottoms for after.

I don't know how small your baby is. My DS was 560g born and whisked away to NICU before I could even see him. I was glad I was prepared for this as it would have been very upsetting.

Re. breastfeeding. I found expressing very difficult and needed medication (domperidone) to up my supply but I perservered and DS was fully breastfed until he was six months corrected and I only stopped feeding altogether when he reached 18 months a few weeks ago. It can be done! Some people recommend fennel tea to help with milk, maybe put some in your hospital bag?

I have plenty of advice about pumps, expressing etc that may be of use to you later. Also Bliss have an excellent booklet about breastfeeding premature babies that you can order or download at bliss.org.uk. There is also a message board there with lots of mums who have been through the prem baby journey.

I hope all is well on Friday and I know of people who have continued with their pregnancies for many weeks after news like yours. But it is probably best to pack a bag just in case. I went in with nothing and had to manage with random things DH brought in and send my mum to M&S for big pants! And get a couple of feeding bras for easy expressing.

It sounds like you are happy with your hospital and being well looked after. Are they a level 3 hospital do you know? They are the ones with the best facilities for really tiny ones. And I was told to monitor movements very carefully and tell them straightaway if they reduced.

Blimey I have gone on a bit, sorry. I will be wishing you much luck on Friday, and if I can help at all or you have any more questions please let me know. My DS had a tough time but he's doing really well now. These babies are strnger than you think! xx

Or stronger even.

And I did have the steroids, second dose about 50 hours before he was born. His lungs were not so good so I am very glad he got the benefit of them. Will stop rambling now!

Thanks so much, hearing advice from Mums who have been through this really helps.

I went in to the Labour Ward this morning to have a trace as was worried that the baby hadn't been moving and they were super nice; in fact they brought my growth/doppler scan booked for tomorrow forward and did it today and baby is fine (started wiggling as soon as they started monitoring, typical!) and has put on some weight and the situation with the placenta remains stable, that is to say, not great, but at least no worse.

So, now I know what the little one weighs, and currently it is 710g which sounds tiny but has gone up form 56og a week ago, so that is also good news.

I had a chat about breastfeeding with the consultant who was hugely encouraging, and I will ask about going to see the SCBU when I go back - which is on Monday as they have scheduled me in for steroid injections then (and Tues), with the next check/scan/doppler being on 4th April.

We are feeling a bit more positive now, as by 4th April I'll be over 29 weeks.

Thanks also for the tips on Kangaroo Care, which I am really keen to learn more about.

Off now to order the book you recommended efeslight.

Hello MMM. I am glad to hear all is as well as it can be, I have been thinking of you. It's brilliant your baby has put on weight! Someone told me they like these babies to get to 28 weeks and 600g before delivery so your LO is doing really well. I'm so glad they were helpful on the ward- I asked for a trace at one point in hospital because I hadn't felt DS move, and the midwife on duty was really huffy about it. Still makes me cross!

It's good you are getting the steroids too. Sounds like you are in a very good place.

Bliss do a Parents' Guide which prepares you for what is likely to happen in NICU and if I recall correctly there is info in it about kangaroo care. It's really good for your baby and bonding but it can also be good for your milk. You can get it from the Bliss website or the hospital might be able to give it to you.

Wishing you lots of luck and sending positive vibes.

I had low PAPP-A at 12 weeks too as well so had warning. I developed high blood pressure and DS's growth started to slow around 28 weeks and was transferred to consultant led care at the high blood pressure clinic.

Started beta blockers at around 30 weeks and had BP checks about three times a week, scans every couple of weeks. At 35 weeks was admitted for c/s as blood flow in DS's brain was a worry.

He was 4lb 5oz - Caesarian was fine, very calm and I was even joking with the theatre staff. Was nervous of course but as soon as I heard DS cough and cry I was so happy. He was whisked away and I didn't see him for about 12 hours - I had been asking to go to SCBU but they didn't want me to get up before then. DH was going back and forth and taking photos for me. I was shuffling around the next day and the recovery was actually a lot easier than I had expected.

I started expressing colostrum by hand as soon as I got to the postnatal ward - don't expect your milk proper to come in for about 5 days. So they gave me little 1ml oral syringes and I had to catch each drop as it came out - tricky but it was good to keep my mind off the worry, I did it as much and as often as I could. Unfortunately my hospital didn't have a milk bank so the colostrum was mixed with formula and given to him via an NG tube.

As soon as my milk came in (woke up on day 5 with rock hard boobs) I switched over to the electric pump they had on SCBU - everyone had their own attachment and sterilizer tank and you'd just sit behind a curtain on a rocking chair with the pump attached to you. It helped to look at photos of DS - made me produce more milk.

We started getting him used to breastfeeding on day 2 I think - he was so sleepy he'd only manage like 10 or 20 sucks before falling asleep but we kept going and the amount he'd get from the breast would go up and he'd have less and less down his tube. The nurses were very helpful at getting the latch right - I didn't know about biological breastfeeding at the time but I wish I had - read this: www.biologicalnurturing.com/# I think it would have been easier for me, and less painful.

Hold your baby as much as you want, sit next to him/her and read - whatever you want to do. Never feel like you are getting in the way.

Best of luck, I hope you can make it to 30 weeks at least. x

Thanks everyone for your advice and kind words.

Just back from another scan and should be feeling ok as the verdict is that placental function has not declined so they are happy to leave it another week before they see me again, BUT the baby's estimated weight is only 780g and I just can't seem to get over how small that is. I am 29 weeks today.

Please please please start putting on weight baby!

Hello Milly. Glad you've reached 29 weeks. I had mine at 29 weeks following a placental abruption, and had to have an emergency section. There was no warning - I just started to bleed. DD was 2lb 6oz and was on the ward with babies of 750g, and this was 9 years ago! Even then, a 29 weeker had a 95% chance of survival. DD had underdeveloped lungs, but was fine and has never had any health problems - quite the opposite in fact! She suffered with infections in her first year but I'm convinced she owes her rude good health to having fought off these infections at an early age!! I didn't get any milk, however, despite drinking Guinness, eating Mars and pumping for Britain. Try not to let this get you down if this happens to you. Good luck with everything - sure it will all be fine.

Thanks fedupandfifty, good to hear good news stories about 29 weekers, and littuns too! And thanks Bearcrumble for some really top advice. Feeling a bit more positive today, this is such a rollercoaster, it's horrible not knowing every week whether it could be the time they decide the baby has to be delivered, but I feel I owe it to the babe to be as strong and positive as possible, it doesn't need a stressed out Mummy!

Hi Milly, Just to add support. One of my DTs had this, I had pre-eclampsia, spent the last 2 weeks of pg in hospital and had a section at 37+3. We had the steroid injections - they sting a bit but not as much as I had been led to believe!

Both Dts were in NICU for a fewdays and were tube fed expressed milk and formula top-ups even though I too was desperate to breastfeed. The NICU really supported me with this. By 1 week old they were both ebf and we carried on for 10 months.

As far as the c section goes, the acute procedure is really fine though I was really scared it was just a bit odd really. After the section really do insist that people hep you loads - the nurses are so busy they will just assume you are OK if you don't make them aware you need help.
12 hrs after my section I was walking over to NICU to see my boys. 10 days later I did a half hour walk.

The very best of luck. To be well informed is really important. If you can possibly wangle a private room and get DP/DH to stay that is an enormous help. I am sure if DH had been there helping me to position the DTs to feed they wouldn't have needed to go to NICU with low blood sugar.

MMM I had DS1 at 29+4, partially due to placenta issues but also pre-eclampsia. He was 1002g when born (and had only shown at 850ish on the scan) I was so relieved as it meant he was big enough by 2g for our local SCBU:). However I didn't get to see him for 36 hours, which is unusually long, because of another v small baby being born at the same time and needing to be transferred out, and that was pretty tough.

We were in SCBU for 10 weeks and I did express for him the whole time, we never really got on to actual BF, but he had expressed milk until 5 months and then went on to formula - which in the circumstances I was extremely happy with. I did say that if I had another premmie I would use formula from the start as the whole experience is stressful and getting up in the middle of the night each night to express did not help me cope with the other issues that arose. However DS2 was full term and I did BF for 6 months in the end.:)

If I can give you any advice it would be to take as many photos as possible and maybe keep a journal as my DS1 is 6 next week and the whole SCBU experience is now becoming a bit of a blur - DS is very interested in it all though and we are raising money for another boy who was in SCBU at the same time as us and now needs to travel to the US for an op.

Good luck and keep us posted!

Oh yes, had CSs with both my DSs and with DS2 got a private room (after 24hrs on recovery ward) - it was lovely to have a bit of space and quiet.

Thanks SouthGoingZax and abgirl. Well, we have made it past 30 weeks (30 + 3 today!) so that is great. Also had a scan/doppler appointment yesterday and were told that there is no change with the placenta function etc so to aim for 33 weeks, which is good, although I think I am now going to be going in for a CTG and a scan on separate days every week.

The baby is still tiny - 850g from scan measurements, but hopefully still has 2 and a half weeks of weight gain at least ahead of it. I too have to get the baby to 1000g to get into the local SCBU so extra incentive!

Thanks for all the advice and support, starting to come to terms with the inevitable c-section now and feeling a bit more positive.

Hey MMM just checking in. Glad you are still cooking and feeling more positive. Fingers crossed for weight gain.

Good news Milly, i've been checking regularly for updates, and wishing you well. We were told every day inside counts so you are doing well. Look after yourself

Hi Milly,

I'm sending you all positive thoughts for your LO. I have also been diagnosed with placental insufficiency, following small measurements at my 20-week scan. We are currently waiting...and waiting...because nothing else can be done now until we reach 27 weeks (scan on 4th May), however badly the placenta is doing. I can really relate to your willing the baby to grow...I have even taking to singing a "baby growth" song when I'm out of earshot of my other half! I am told that the baby needs to reach 550g for them to be able to deliver, so the fact that yours has reached 850g and 30 weeks I think gives you a really excellent prognosis. Please keep posting if you can. All best wishes.

Hi Sixer10, sorry to hear you are in the same boat. Have you had a scan since 20 weeks? I only ask beacuse after my 20 week measurements I have had one weekly since 23 weeks, which, I have found reassuring. We are now going in several times a week for scans, dopplers, and ctgs. Also have you had/been offered/discussed steroid injections?

I am feeling slightly more positive, although I am on such a rollercoaster of emotions, tearful one day and then ok the next. I am so pleased to have made it to 31 weeks tomorrow! We are just back from a ctg and the baby's heart beat is good and strong, what is getting me in a right fluster at the moment is checking for movements, which I keep being told is super important, but it is so hard as they seems to change day to day and I don't want to keep going in and pestering them for a trace!

From my baby-brained calculations of your 27 scan week dates, you must be about 25 weeks; so getting there, do you know how much your baby weighs at the moment? Really hoping your growth songs are working, I have been giving my placenta a really good talking too in the hope that that helps, and also eating extra Cadbury's creme eggs...

Keep me posted and let me know if I can be any help with any questions, I have 2 absolutely fab consultants whose brains I have comprehensively picked. Feeling that forewarned is forearmed.

Take care of yourself and that baby. I have next scan and doppler on Monday so will update then. Keep your fingers crossed that baby stays in.

Hello, well; just back from hospital, and baby is going to be delivered tomorrow. I think the verdict is that the baby is better off out than in, so feeling a very strange mix of emotions right now. I'll be back to let you know how it goes, but keep your fingers crossed that this little baby is a fighter.

Hello Milly. Good luck for tomorrow. You know your baby is already a fighter, look how far she has come. She has every chance of doing very well. I hope everything goes smoothly and you are able to spend time with her as soon as possible.

I will be thinking of you and your little girl tomorrow. Hope you have packed your big pants! Look forward to hearing how it goes.

sixer, hope you are ok. I also used to chat and sing to DS to encourage him to grow. He was 560g born, had his issues but now doing well. Keep us updated. I hope your LO is growing and kicking away to reassure you. Where are you in the country? Have you been referred to a specialist unit?

Thanks for your messages, and I'm so sorry not to have posted sooner. In the latter part of the seemingly endless wait for 27 weeks, I found it difficult to compare myself with anyone really, without knowing what we could be dealing with. The scan was on Tuesday, and whilst the placenta is clearly struggling, the baby's brain and heart are normal size, and he isn't showing signs of having to make "adaptations" yet (whatever that means). He weighs 737g, which is obviously tiny and far less than he should be, but I am still quite delighted with this as my previous consultant was so pessimistic about even reaching 550g. I am being seen at Tooting Hospital by Professor Basky, who inspires enormous confidence. I need to go back in 2 weeks, and then perhaps weekly, depending how it is looking (whereupon I need to pack a bag). So, it looks hopeful that I will reach 30 weeks - I would love to go further still, and reach the magic 1kg.

Oh, and I have placenta praevia too, although that seems almost an irrelevance really. Is there any news on MillyMollyMandy on another thread perhaps? Would love to hear she and the baby are well.

Hello! Sixer, that sounds really positive, sending big fat growing thoughts to your little one. Sorry I haven't been online in ages, we have been flung into the world of neonatal intensive care and all that it brings.

Baby Clementine (a girl!!!) was born on 19th April at 31 + 2 weighing 923g, and is now doing well after a seriously rocky start (delivery etc were fine; and no inherent problems with baby or size but she contracted a really nasty infection at 5 days). We are spending every day with her and she is a lovely little baby, being exclusively breast fed with expressed milk and is loving lots of kangaroo cuddles and hopefully growing little by little, day by day.

We are taking things one day at a time, but will keep updating. Please let us know you get on Sixer.

xxx