I'm new here....28 weeks pregnant with lupus

[Swifty77]

Hi - I've had lupus for quite a few years - I'm now 28.5 weeks pregnant with my first child. I was told on Wednesday that the baby's growth has slowed right down - it seems to be getting longer but not fatter round the middle. I'm having weekly scans to monitor and they are talking about delivering the baby by c-section potentially as soon as in the next 2 weeks, although they will leave it as long as they can. We're trying to remain positive but it's hard not to feel overwhelmed with anxiety...would love to hear from others who've had similar experiences....

[KGipp]

Hi, sorry this is such a worrying time for you. I had my daughter last year and she was delivered 6 weeks early, by c section, due to placenta failure which was limiting her growth (a symptom of lupus). She was in NICU for a couple of weeks but was absolutely fine. She was just small. All I’ll say is that the hospital will do whatever is best and they are well equipped to care for early babies. My daughter is now 10 months old and perfect in every way. You’d never now she was premature. Take good care of yourself x

[Swifty77 in reply to KGipp]

Thanks so much - good to hear that your daughter is doing well How many weeks were you when they realised she wasn't growing? They think that in my case too it is almost certainly the placenta failing, although blood flow is still fine at the moment between placenta and baby. At least I feel like I'm in really good hands with the obstetrician I have, and the premature baby unit here in Bristol (Southmead) has a very good reputation...just hoping we can hang on as long as possible and get this baby as far along as we can!

[KGipp in reply to Swifty77]

I found out at my 30 week scan and managed to hang on another 4 weeks. I had weekly scans to keep monitoring baby between 30 and 34 weeks. Wishing you the very best of luck xx

[iffa28]

I hope everything goes well for you and the baby. All the best!

[Swifty77 in reply to iffa28]

thank you!

[Paul_Howard Partner LUPUS UK]

Hi Swifty77 ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

We actually published a blog article yesterday which features some experiences and stories from people with lupus about their pregnancies. You can take a look at lupusuk.org.uk/lupus-and-pr...

Please keep us updated with how you are getting on. It sounds like you have a good medical team keeping on top of things?

[Swifty77 in reply to Paul_Howard]

Thanks Paul. I saw (and contributed to) the pregnancy blog article.

I will keep you posted - My medical team are fantastic - very good at explaining everything clearly, and I'll be having scans weekly from now which is reassuring

[PMRpro]

Not because of lupus - but both my daughters were delivered by c-section, the first because of pre-eclampsia, the second because she wasn't growing. No 1 was 8+ weeks early and weight 1300g (2lb 13oz), she had some problems breathing for a few days. No 2 was 5+ weeks early and weighed 1090g (2lbs 4oz) but perfectly healthy, just small. They had told me at 29 weeks she was about 1300g, kept me in hospital for weeks and assured me every day was a few more grams!!!! Really???/

The first is now a NICU nurse and the second a paramedic. This was in 1980 and 1982 - and things have progressed a lot since then! NICU babies are the best - very special.

You will probably get injections in the meantime to encourage the lungs to develop more quickly which is one of the biggest problems in very early babies. Don't be afraid to ask the paediatricians about NICU and what goes on there. If you have never been in there it feels terrifying - but it isn't as bad as you think.

Parents are now encouraged to be with and touch their baby as much as possible - I was with No 1 in Scotland but No 2 was born in Germany and they were way behind Scotland in those days so it was a fight to be there and stroke her/play with her in the incubator and I rarely got a cuddle but I succeeded. I also took both home after 6 weeks, weighing just 2kg/4lbs, and both fully breast-fed - I had been encouraged to try in Scotland and was determined to do it in Germany although they were very sceptical. I proved them wrong

All the very very best - do tell us how it goes.

[Swifty77 in reply to PMRpro]

Thanks for sharing your experience - really encouraging to hear - and i love that they both went into healthcare, and your eldest daughter now cares for premature babies

I'm due to have the steroid injection next week when I go for the scan, that way we're ready if they do need to deliver in a hurry. Hoping we'll get a few more weeks yet tho....

Cuddles and breastfeeding definitely high on the agenda once the baby is born

[PMRpro in reply to Swifty77]

You asked the other lady about when she knew the baby wasn't growing. For me I had a scan at 26 weeks that was normal for dates. The next one showed "normal for 26 weeks", so probably at 29/30 weeks and then I was admitted. Then I had 4+ weeks in hospital, just before Christmas, she was born on 22nd December. But she was fine - which is all that matters.

[Melba1]

Hello, it is a very worrying time but getting past 28 weeks is a key time so every week/ day from now is a bonus. Great you’ve got a good team you can trust too and I agree with PMRpro that NICU and SCBUs are very special places. I have lovely memories of my babies time in there even though it was frightening at times too - it was a lovely warm kind place, felt a bit like being nurtured in the womb for all of us!

We had a scare at 26 weeks but they (mine were twins) held on until 31 weeks, I had the injection and full labour to give time for the lungs to have the full effect and then a last minute C section (as one of their legs came out naturally 🙄). One needed help breathing (Cpap) and neither could suck so tube fed. I worried a lot that their intellectual and physical development would be affected and in the first year they were less advanced than others the same age. I can remember them not being able to sit up when the others were all crawling around.

They are 15 now, 6 foot 2, very clever (one did his GCSE maths at age 11 and got an A*) and run cross country at county and national level. I’m not saying this to show off about them just to reassure you that an early birth does not mean they’ll necessarily struggle with things. Their immunity is quite low which I presumed was prematurity but we have since discovered that I have an immunodeficiency disease and it seems more likely that their immune issues are from that rather than prematurity. They did have quite severe asthma when little but grew out of it at about 7. They also love hospitals and one is determined to be a doctor.

My hospital took me around the special care unit before birth and I’d certainly advise that if you can.

Good luck to you and little one - please let us know how you get on and send a photo when he/ she arrives but hopefully they will hang on a bit longer. Oh and don’t feel any guilt or that there is anything you personally can do about it. I kept being told it’s better for the babies if you can hang on until 28 weeks then oh try and hang on another week etc but not sure what I was supposed to do to hang on - cross my legs?! 🙄

Xx

[Swifty77 in reply to Melba1]

Yes - difficult to keep your legs crossed and carry on with normal life

that's a good idea to ask for a look at the special care unit - I'll ask next week. By coincidence a new member of staff who starts working with me on Monday (I work as a horticultural therapist on a farm) has previously worked at the premature baby unit in Bristol so I can also grill her

Great to hear that your twins are thriving

[Ladyuponthelake]

Hi Swifty,

Another possibility and hopefully right. I had my 28 week scan and it had NO growth since my 24 week scan. So I too had scans every week as well as heart monitoring and had normal growth after that.

They told me sometimes it's the person who's taking the measurements, using a different technique which makes the measurements inaccurate. I hope this is true for you. I'm hoping it may give you some comfort that it could possibly be simple human error.

If it's alright with you I will pray for you and your baby.

Biggest of HUGS 💓

[Swifty77 in reply to Ladyuponthelake]

Thanks ladyuponthelake! That would be great if it was just an incompetent scanner....I'll keep you posted...

[Ladyuponthelake]

Not so much incompetent more just different techniques, as I was told. Just so you don't go to anger. Baby wants a calm Mummy. 💗

[KatieRL]

Hi Swifty 77 - what a really worrying time for you and I wanted to try and put your mind at rest just a little!

I was diagnosed with Lupus (SLE) at 23 and was three months pregnant. I had an early delivery at 32 weeks and he was 5lbs (2.27 kilos). My Lupus was well controlled and fortunately I didn't flare again until he was 5. My GP and Lupus doctors drove me nuts about my son's size and weight, but now he's a strapping lad of 6'4" with a daughter of his own! I wanted you to be aware that it's not an easy ride, but with good care from your Lupus doctors (and your GP) you can win, and even if your baby has a slightly low birth weight, after they are a few years old, you wouldn't know the difference! Stay strong and I wish you well throughout the rest of your pregnancy and beyond xxx

[Swifty77 in reply to KatieRL]

thanks KatyRL - I'm feeling more positive - this forum has really helped - and having a few days to get used to this new turn of events has made me feel less anxious. It helps that I'm feeling well and that the baby is very active, and the movements are getting stronger if anything, we can often see the bump moving now which wasn't happening a few weeks ago xx

[Sara_A]

Hi, I have had 2 babies now 5y and 2y and have lupus and aps. Do u have antiphospholipid syndrome too? Are u on aspirin or heparin injections??

Anyway I had regular growth scans from around 20 wks ish and in the 30+ wks I think it was their growth began to tail off and it was planned they would both not be allowed to go over 38 wks so was induced for one and had a sweep with the other. They prefer to get them out as they can do so much better outside! It’s good they are covering u for steroids for baby’s lungs etc.

It’s great u are having good regular care and close monitoring.

It’s such a worrying time for you both but I’m sure all will be good, lots of babies do so well premature it’s amazing. Try to stay positive.

My 1st weighed 5lb 12 and 2nd was 6lb 1 and all perfect too. As I have aps I was on aspirin for the first baby and as he was fairly small and the growth had started to tail off they decided for my 2nd I’d have aspirin and daily heparin injections from 6 wks pregnant. They thought this may improve her growth by increasing the blood flow to baby x

Look after urself x

[Swifty77 in reply to Sara_A]

Hi Sara - Thanks for sharing your story... I don't have antiphospholipid syndrome, but I started on aspirin at 12 weeks and heparin injections before that, I think around 10 weeks - just a prophylactic dose to start with, but that was doubled in Feb when my lupus flared. The plan for me too was to induce at 38 weeks, but seems unlikely we'll get that far now! I'll be happy if we get to 32 weeks, and the baby puts on a bit more weight - he/she is probably around 1 kilo now which just seems so little...hopefully we can get a bit more weight on before he/she puts in an appearance...xx

[johare]

Hi, Its lovely to hear of your pregnancy. My youngest daughter was born at 32 weeks. She still weighed 5 lb 8 oz. 24 years ago. She is happy and healthy and only stayed in special baby care due to sucking problems. Good luck.

[Swifty77 in reply to johare]

Hi Johare, thanks for your response - that seems like a good weight for 32 weeks, and good to hear that your daughter is doing well xx

[johare]

Yes we were all amazed at her weight. She was a twin. Unfortunately we lost her twin at 12 weeks. I was off and on bed rest throughout the pregnancy. She is my youngest of four so I am very lucky. I did not know then that I had lupus, although the consultant thinks I probably did even then, as I had a lot of the symptoms which were not put together.

Although I lost the twin there were many other contributing factors. I had three other children I was chasing around after, I was a part time nurse, my next son was only 10 months old when Rebecca was born so my body had not had a rest. I was not having any treatment of care for the lupus I now know I have.

Please remain positive and calm. Babies are resilient and the care they receive is amazing.

[LupieLady45]

Hello Swifty77...Firstly congratulations on your pregnancy. I was diagnosed with Lupus in 2003. I had my first baby in 1999. I was 7 months into my pregnancy when the doctors noticed that my baby was not gaining weight and was long. I had to go on early maternity leave and was told to bed rest. Like you I was monitored weekly with scans. I managed to go full term with the baby but towards the end the baby was not moving and heart beat was lost. I had an emergency ceasaren and my daughter Ria was born on 17th November weighing 4lbs. She was taken straight into intensive care where she was on a food drip and monitored around the clock. After a month she had put on sufficient weight and was given the all clear to come home. It was hard to breast feed her as she was so used to the nose feed drip so the first bonding I never got to actually experience. I expressed the breast milk and bottle fed her topping up with a hungier baby formula milk as adviced by hospital. Ria is now 18 years old and a healthy tall beautiful women. The doctors and nurses did an amazing job.They are trained to know the best for you and your baby. I wont lie and say it was easy it was the worst time ever. I know your anxious but please trust the doctors and nurses who are there to give both of you the care and advice you need. We take the nhs for granted at times but I can not fault the attention to detail during my pregnancy. My prayers are with you and your family. Hope my story gives you the faith you need x

[Swifty77 in reply to LupieLady45]

Thanks LupieLady for sharing your experience and for your honesty. Can you remember why they told you to bed rest? I'm still working 4 days a week, although I'm not doing the physical aspects of my job

[LupieLady45]

I was told to rest as baby was not getting nutrients it needed and I was very low in iron. They said the little I did less chance of stressing the baby. I was going to work right up to the last minute however I didn't anticipate that I was going to have these issues. I had my second child in 2003 and had same issues however I knew from the beginning what to expect and rested for the whole 9 months. Dylan was born in may by scheduled c section in 2003 weighing 6lbs which was tiny but he didn't need intensive care however I was advised to feed him hungry baby formula. I was then diagnosed with Lupus. See how you feel within yourself but I wasn't taking any chances work will always be an option in the future. Just make sure you are resting and eating what you want when you want that's the most important factor and listen to your mother instincts. Both of my children are healthy fit and very tall individuals. I think I've had lupus longer than it was diagnosed and childbirth can bring an actual flare. Its a very scary and know you feel that your to blame. You are doing the best by protecting and listening to medical advice. But the most important factor is that we have the best care available when we need it. Please keep me informed on your progress. xxxx