Hi,

I would be happy to answer questions. Ds2 was IUGR; he's just turned 2 now, so I may not be able to remember much about those early days but ask away and I'll see if I can help. Would prefer not to email at the moment as my email address has my RL name in it!!

I could help too - dd was IUGR but 3 years ago - is this too long ago ?

I would also be happy to answer your questions. I have had two IUGR pregnancies, a DD now nearly 4 and a DS 15 months.

Also as Toothyboy would prefer not to e-mail for the same reason

DS1 was IUGR, he is now 8. he was induced at 378.5 weeks weighing 5lbs 5oz.

DS1 didn't feed well, and his weight fdropped off quite a lot- it was Millenium weekend and I ended up givng him formula, which he vomited: once on soya formula he started to thrive but he does now have some problems- on the lower end of the autistic sprectrum, dyslexia, semantic pragmatic disorder, smallerst lad in his class as well.

Hi my DD was IUGR - 3lbs 14oz at 36 weeks- now thriving 2 year old. I would be happy to participate in your research as I found it very hard to deal with at the time and we had a huge problem with feeding and weight gain.

My email is sarah.scott3@ntlworld.com

Firstly thank you all so much for replying. I am overwhelmed at your kindness. (Special thanks to elizabethsmum - your email was amazing).

Secondly, sorry for taking so long to reply - I couldn't work out how to reply, so I have registered under the very imaginative name anotherstudent!

If you don't mind answering a few general questions that would be great.....

I am interested in when in your pregnancy you were told about IUGR, and what you were told about it. Were you ever told why it might have happened (often there is no "cause", but what were you told?)? Did you have Doppler scans or other investigations?

I also wanted to ask some questions about feeding - were you able to breast-feed, or supplement formula feeding with breastfeeding? And related to this, did your child need to be fed at hospital?

In more general terms, how did this affect you in the first few weeks after birth, and how are your children now? Have you had help/support for healthcare professionals or has your family been your rock?

Thank you again, this will help me so much and hopefully increase understanding of the emotional effects IUGR can have on families.

Justine

Hi Justine,

At my 20wk scan, the sonographer noticed that ds2 was small so brought me back a few wks later for a growth scan; he was still small but had grown in proportion. At 31wks the midwife measured fundal height to be 28 so referred me to the hospital for further checks. I spent the next 7 weeks undergoing regular growth scans, dopplers and general monitoring.

IUGR was first mentioned around 34/35wks. I don't remember being told much about it and did my own research on the internet. There was no obvious reason for it and I was never given any explanation for it.

Ds2 was delivered by cs at 38+5, he weighed 4lb 15. I was able to breastfeed straight away (still in theatre) - it was in my birthplan to have skin to skin immediately and to feed asap. Fortunately he was born healthy and didn't need any special care.

It took him a while to get the hang of bf and I think that had I not already bf a baby and felt confident in my ability, I almost definitely would have given him formula in hospital. The midwives were very keen to get him feeding, his blood sugars were checked regularly. On one occasion during the first night, he hadn't fed for a while (4 hours maybe), the midwife was taking him to check his blood and actually asked me which brand of formula she should bring back. I insisted that I wanted to try bf again, and fortunately he fed.

My milk came in quickly and once we were out of hospital, feeding became very easy. He gained weight steadily and I didn't have any concerns about his feeding. The only difference his IUGR made by this stage was that I had him weighed more often than I otherwise would have done and he fed more frequently (and through the night) for longer than ds1 did.

I weaned him at 6 months and have never really had any worries or concerns about the amount he eats, or weighs. He has always been very strong and active, so there has been no need to treat him much differently than I did ds1. As far as I'm concerned the worries brought on by IUGR disappeared within days of his birth.

He was 2 a couple of weeks ago and is still small (weighs about 25lbs) - he's just moved into clothes aged 1-1.5! But he's perfectly formed and utterly adorable. He is definitely making up for what he lacks in size in humour and charm!

Hope this helps. If you've any further questions, ask away and I'll be happy to help.

Oh what a lovely positive story toothyboy! Thank you so much.

It's interesting though that midwives push formula so often.

Do you think it would be fair to say that feeding well early (either enough to put on weight or just being able to latch on and feed) seems to be a big factor in your feelings/experiences about IUGR?

Again many thanks to you all

Justine

Both my dcs have been small (dd was 5lb 13oz at 39+4 and ds was 4lb 2oz at 36 weeks). They are now 9 and 7. Dd had no problems, but technically wasn't IUGR as more than 5.5lbs at term. Ds was in special care for a week, and NGT fed for three days. He was on a drip for the first 24 hours and 2 horly I think skin pricks. Oh and a lamp for jaundce! Becuase my dd was small his growth was monitored two or three times in pregnancy, also a doppler but blood flow was fine. They wanted to scan every week after 34 weeks but ds arrived early so no neeed for that! I had problems bfing so 'topped up' with ff. Not sure whther this was cos he was small or early though - or both. he was very sleepy most of the time. Expressing was encourgaed in SCBU, but no particular encourgaement to bf myself. If I hadn't successfully bf dd I probably would have given up. As it was it took a month to wean him off the top up feeds.

He was alwasy small as a baby, below the predicted centile ranges given my and dh's heights, so at a year he was referred for general assessment (he was also slow to sit up and had another, unrelated condition). He was tested for various things including HGH levels and chromosome abnormalities. All cam back normal. A bone scan at about 3 revealed his bone age was about a year less than his chronological age. At 7 he is still one of the smaller ones in his class but presumably will have lots of catch up growth in his late teens or early twenties. He holds his own though!

To answer your question, yes it would have made a huge difference if I'd been able to bf him as easily as I'd bf dd. I foudn it particularly frustrating cos I knew I could do it, but somehow it was such an ordeal. The hospital also wouldn't let him out until he'd regained his birth weight (he lost over 10% of birth weight so more to make up than usual). Fortunately I'd had a CS so was in hospital with him. If I'd had a VB and been sent home myself I very much doubt whether I'd have stuck at the bf simply becuase of the logistics (I was never very good at expressing) of only getting him to latch on when I was visiting. Also I'd have been desperate to get him home so probably would have ff just to get him back to his birth weight quicker.

Justine,

Yes, I would agree that the fact that ds2 fed well and gained weight steadily was a big factor in my positive experience. I also think that because he didn't have any other medical or physical issues I was able to relax almost straight away and just concentrate on feeding without any other worries.

Hiya
My 3 were all suspected IUGR, but I don't think they were. All were born naturally at 40+9 (5lb 11 oz), 40+3 (5lb 8oz) and 40+6 (6lb 8oz).
I had growth scans with my first, but after she was born post term well, but small, I decided I just grew hem smaller than average. In my head, I haven't considered them IUGR.
They did have probs feeding though - all had small mouths and had probs latching on. I used nipple shields to give them something bigger to latch on to, and used them till they were about 4 months or so.
Feeding support was not great. Was not 'allowed' to leave hospital with dd1 until feeding was established as she was small. Hwr, support was rough and inconsistent. Only thing that worked was putting a bottle teat over my nipple to get her latched on. Previous to that I was spoon feeding her.
I was paranoid about feeding with the first two as they were small and fell off the centile charts. So did #3 but I was relaxed more by them and had learned to use my instinct, not rely on medical advice that wasn't suited to my petite children.
My 3 are now 7,5 and 2. All are average height, but around 25th, 2nd and 0.4th centiles for weight respectively. All perfectly normal though .
Not sure if this is any use though, as I said, they were called 'smalled for dates' 'suspected IUGR' on their notes, but despite their dad being the size of Jonah Lomu
, they are actually just meant to be petite.
Good luck with your research!

Thank you again to all of you who replied, it was such a great help.

I have now written my project, and have collated your experiences (without using names, quotes or any other identifiers) with those of other mothers. There seemed to be a common experience of lack of information given and lack of support for breast-feeding.

I showed a draft to a supervisor who was very impressed, and said I should show my report to the president of the Royal College of Obstricians and Gynaecologists!

If you agree I would like to do this, as hopefully it may lead to some positive changes and guidelines in the management of IUGR.

All the best, Justine