Going for a second after having a premature baby

[sparky28]

I would like to hear about experiences of having subsequent children after a premature baby (due to pre-eclampsia/HELLP/growth problems in baby).

I found the whole experience really awful although my dd and I are both fine now so I know I am one of the lucky ones. We are now thinking of a second but sometimes feel terrified that we will go through the same thing (but with a dd who needs her parents).

In summary, I was 33 weeks and feeling fine apart from odd minor headaches. I took myself to my local day assessment unit and it was found that my bp was higher than listed in my notes but still ok. However the next day I was called into hospital for monitoring as max amount of protein was found in my urine. Baby was measuring small (under 5 centile) but this wasn't so much a concern as I am on the small side (plus I always thought my dates were a couple of weeks out). I spent 11 days in hospital and had my bp taken so much that I now have a fear of it being taken at all. I basically didn't get any sleep/rest for 11 days due to a noisy hospital environment plus I felt alone and terrified! I remember I kept thinking that I would be discharged and go home. It never happened. Despite all manner of meds my bp kept rising and tests showed an increased blood flow resistance/plus baby didn't grow very well over one week. All culminated in one day where bp went crazy (although I still felt ok) and I was rushed in for emerg cs (I had weird horrible breathing difficulties before op most likely due to shock). Dd was born at 34 plus 2 days, only 3pd3oz. Complete shock! In neonatal unit for 4 weeks and 2 days, no major problems but establishing feeding was a nightmare plus the trauma of being home without her was awful. 17 month old dd is thriving now. Still on the small side but like me in this respect.

So, just want to find out if you received any conception tests such as blood tests for potential disorders linking to HELLP/PE? Did you change anything in your diet/lifestyle before conception and throughout pregnancy? Did you carry on working or cut back knowing how things went the first time round? Were you monitored/how often/what type of monitoring? Did things work out the same/better/worse than with first pregnancy? Did you get further along than with first? If you were treated in London, did you see any particular specialists you can recommend? Did you have a greater say with hindsight on your treatment second time around? E.g I am considering hiring a bp machine so I can avoid a hospital stay. I definitely wouldn't want to leave my dd for 2 weeks!

Thanks!

[DidThatJustHappen]

I'd love to hear any experiences here - I had a similar experience to you OP with 3.5 weeks trapped in noisy shared ward before DS was delivered at 29+6 weighing 2pds2. I don't think I could go through it again and wouldn't want to leave him but it isn't clear what caused it. Did you have any follow up tests to help understand what happened?

[catslife]

Try contacting Action on Pre-eclampsia (APEC) they have information on this type of question. You could also try seeing your GP who may refer you to a specialist clinic for tests e.g. blood tests which will help you assess the risks.
It isn't an easy question to answer as it varies for every woman but what I was told was that the chances of recurrence were higher the earlier a woman had a premature baby first time round. So it would be highest for women having pre-eclampsia earlier than 25 weeks and lowest for those having pre-eclampsia at 35 weeks+. However second time round it usually occurs later on in the pregnancy and it is very unusual to happen earlier.
I did go for tests (not London though) and opted not to have a second as the risks came out too high. I do have friends who have gone onto have several more pregnancies with no recurrence though.
Hope that helps

[sparky28]

Thanks - both really helpful. I haven't had any tests as of yet but it's something I will see my gp about. I am in contact with APEC but have been waiting since March to get an appointment with a specialist. It's frustrating how little medical research is currently happening into these maternal disorders isn't it?

[falgelednl]

Hi - I don't have any experience of pre-eclampsia but I do have a lot of experience with premature birth as all 3 of my children arrived early.
DD1 at 30 weeks weighing 3lb
DD2 at 35 weeks weighing 5lb 9oz
DS at 34 weeks weighing 5lb

I had no medical issues at all in the run up to the arrival of DD1 but the birth was very quick and traumatic (they tried to stop it but was too late) - we both had medical issues afterwards.

No medical issues with DD2 and she was absolutely fine other than being a bit early and small. She was only in NICU for 10 days.

Borderline gestational diabetes with DS but he was fine.

(When I say fine, I mean breathing on delivery! All of them were tube fed in their early days (some for longer than others) and we never got BF established with any of them. I had PND after all of them.)

Today, aged 8, 6 and 2, you cannot tell that any of them are preemies. DD1 has vision problems and took A LONG time to start growing. DD2 also has vision problems - not as severe as DD1. DS seems to have no problems.

I was in a national study with DS due to previous premature births (all PRoM with no other known causes) and have spent a total of 5 months of my life visiting my children in NICU.

It never gets easier IME although I would not be without my children and I would certainly go through it all again to have them. However, I would not go through it again for another child as I do not think I could survive emotionally with spending more time in NICU and the one here is fabulous and the staff are wonderful and we are still in touch with them even though all my children have been signed off from their paediatric consultants (although DD2 is still under two other consultants).

I would say talk to your GP first - I spoke with mine and my HV and my MW before deciding to have DC 2 and 3. I was under consultant care but opted to remain with MW as there was no reason for my children arriving early so nothing I felt the consultant could do differently from the lovely MW who has been the same one for all 3DC. I am also very lucky in that my HV was the same for all 3DC and she was previously a NICU nurse on the unit where all 3 of mine started their lives.

Sorry for the long post with no real answer but just to say that you can get through subsequent preemie births - our NICU is really well set up for siblings (I have an idea that my girls kind of think that all babies start there although they KNOW they don't) and it was actually a bit easier to leave the second two there as I knew the routine. Was MUCH harder to come home to an empty house after DD1's birth - with the younger DC, the older one(s) kept me going!

Good luck x

[AbbeyRoadCrossing]

My circumstance is different to yours in that DS was premature due to placenta praevia. I was told it was unlikely to repeat, but that some other placenta problems might be more likely.
Anyway, now pregnant with DC2 and I just wanted to say that it was quite emotional getting pregnant again. We are delighted, and it was planned but I've found it mentally tough going compared to the first time. Other second time mums can be more relaxed I think whereas I'm probably less relaxed even though I don't have the same condition.
The good things about it are my care has been amazing. Very thorough scans, extra appointments etc. I really feel like I'm being taken seriously this time.
Good luck OP

[lotsofcheese]

I had PE & HELLP at 28 weeks, DS was delivered by EMCS weighing 1lb 9oz & spent 95 days in nicu; he came home on oxygen & had severe reflux until he was 4.

I asked for a consultant obstetrician referral to debrief on what had gone wrong & discuss implications for future pregnancy. I had a thrombophilia screen (blood clotting test) & was advised to take baby aspirin (75mg) from bfp. Unfortunately PE sets it's own course & there are no treatment options.

There are NICE guidelines on hypertension in pregnancy & these detail the chances of it happening in subsequent pregnancies.

I went ahead with about a 30% chance of developing PE; I was seen weekly for BP checks from 20 weeks & had fortnightly growth scans/dopplers from 24 weeks. I attended a consultant-led high risk clinic & was there fortnightly from 24 weeks & weekly beyond 30 weeks.Psychologically, it was hellish, just waiting for something to happen.

My consultant had predicted I would not get to my due date, and I would get "something" if I didn't get PE, so it was grim. I guess you don't go from early-severe PE to a normal term pregnancy.

I got to 35+6, then had an EMCS as I had low fluid round DD who was breech. The fluid had been reducing for weeks so I knew it was coming, from such close monitoring.

Although DD required scbu for 8 days, and she was jaundiced, with low sugars & feeding difficulties, it was a relief for her to be out safely as I had a great fear of intra-uterine death. Scbu wasn't so bad 2nd time round, probably as DD wasn't so ill as DS previously.

HTH

[sparky28]

Thank you for your responses. I don't think trying for a second is an easy decision to make. I need to put a plan together with my GP based on the risks and care I would receive if we do go ahead. It's reassuring to keep hearing that it's less likely to be as severe second time around plus I would know what to do so hopefully wouldn't be as traumatic...fingers crossed!

[catslife]

Seem to remember that my consultant appointment came through fairly quickly- but the birth rate was lower then and it was before recent NHS reorganisations.
The only other thing that I wanted to add is that many of the women I know who have gone on to have a second child after pre-eclampsia have had a slightly larger age gap than average (3-4 years). You may not be able to envisage being in hospital with a child under 2 years old, but by the time they are pre-school age they are beginning to become more independent and this can help.

[sunflowered]

I'm in a similar position sparky - I developed pre eclampsia at 33 weeks, dd was born at 33+5 and spent 4 weeks in nicu/scbu. We're thinking of ttc again later this year.

I was told when I was discharged that next time I'd need an early booking appointment with the midwife, and would have to take baby aspirin, but nothing else... I was tested for hughs syndrome a few months ago by my own request but nobody's suggested any more tests or any kind of preparation. It's so frustrating that there isn't more knowledge about pe

[RosaHibiscus]

Hi

No issues with pre eclampsia but DS1 was 35w. No reason other than many contraction throughout the pregnancy.
When I got pregnant again I was really worried. The consultants weren't too worried but I had a few trips to hospital. I tried to slow down and that made a huge difference and I managed to get to 38+4 [s
My advice is to try to relax but keeping an eye. Any doubts just call the maternity unit. I have learn that it's better to ask them than staying at home worrying on your own.

Good luck