IUGR - developmental delay

[Ah5337]

Hello, was wondering if I can share my story and looking for anyone's advice/experiences that I could relate to. I am driving myself crazy doing so much research and never finding any answers.

So my ds was born 36 weeks at 3lbs 6oz. He is now 14months(13 corrected) and is 19lbs.

During his very short life he has been through a lot. At 3 months he was said to have delayed visual maturation - this rectified itself when he was around 5 months and he began smiling and taking more interest in looking at things.

From there it was a standstill with his development - he didn't wean at 6 months and I was crying for months knowing something was very wrong. Turned out he was severely anaemic (hospitalised) and this was found at 9.5 months by his paedtrician. Since then he has been on oral supplements and he has progressed quite a lot. He is still not where he should be and this is where my worry comes. I am not sure how to set my expectations as I have never dealt with this before.

He had seen a physio at 9 months as he was still very wobbly and unable to sit (all along due to being anaemic). The physio has said he has normal tone but on the lower end of normal and it would take time to build up. He can now crawl backwards, roll, sit, rock back and forth on arms however he still seems to have a bit of muscle weakness and wobble.

He started weaning at 11 months and started enjoying food. He does not feed himself but I think I have taken it on myself to feed him and make sure he eats as he is just new to weaning and being severely anaemic.

He does not clap, wave, point, dance. He does not express himself well at all. He doesn't understand who "mummy" "daddy" is if you ask him where we are. However he is a very smiley baby. He will smile at anyone who says hi and talks to him. He responds to his name. He gets excited when his favourite TV show comes on. He reached and grabs all sorts of toys (struggles with his fine motor skills). He will hand you a toy if you ask. He will give you a kiss if you ask. He will look at the TV control when you are pressing then look to the TV to see the changes. So it seems there is intelligence but I'm not receiving much back. He does babble, not all the time but when he was attention he will babble oos and aaas. We are not at the two tone "mamama" "bababa" stage yet.

When he was born he was under the 0.4th centile. It seems like his height is now 20th, weight is 12th, but his head is still following the same curve he was born at. There has been no growth spurt. He is due to have an mri scan done to see if anything is wrong but due to covid we have been waiting months with no certain timescale. (Just to add my dd was born healthy on time but had a very small head aswell and she has developed and reached all milestones months ahead)

Anyone's stories or help will be appreciated

Sounds very similar to my DD. She was born at 36 weeks weighing 3lb 9oz. She’s now 22 months and around 24lbs.

It took a LONG time for her to catch up though, whilst she didn’t have any of the problems your DS had (anaemia etc) she didn’t catch up growth wise until very recently. She was late with most milestones (rolled at 8.5 months, crawled at 10.5 months, pulled to stand after a year, walked at 15 months) and still isn’t talking much but she’s getting there. She also didn’t dance, give kisses etc until about a month ago.

Not sure this really helps but I think IUGR babies do take longer to catch up.

@Vicky1989x

Sounds very similar to my DD. She was born at 36 weeks weighing 3lb 9oz. She’s now 22 months and around 24lbs.

It took a LONG time for her to catch up though, whilst she didn’t have any of the problems your DS had (anaemia etc) she didn’t catch up growth wise until very recently. She was late with most milestones (rolled at 8.5 months, crawled at 10.5 months, pulled to stand after a year, walked at 15 months) and still isn’t talking much but she’s getting there. She also didn’t dance, give kisses etc until about a month ago.

Not sure this really helps but I think IUGR babies do take longer to catch up.

Hi Vicky, thank you for your reply.

Did she also have a small head? Did this catch up in any way?

Did she have any issues with her muscle tone?

That's really good to hear she is catching up.
Did your paedtrician have any concerns? I am just worried because I've not experienced this before so not sure of what to expect or when to know something is wrong. It's a constant anxiety attack everyday waiting for some progression to happen.

@Ah5337 Her head was 29.5cm at birth, it’s now 48cm (she’ll be turning 2 on 2nd May), not sure what percentile that is though! She is very short though, about 81cm.

Muscle tone I did notice she was very stiff, she still is now compared to other toddlers. Although she took her first steps at 15 months, she wasn’t steady until 16 months and still was walking kinda ‘funny’ until she was about 18 months. Whether that’s normal or not I don’t know!

No one seemed concerned, but that being said we haven’t seen a HV since she was 5 months old and all doctors appointments were over the phone.

It is a worry, I’m also constantly worried waiting for the next milestone. I wondered for so long whether to start a thread about IUGR babies development because I feel there’s loads on preemies but not much on IUGR.

Your DS seems to have had a tough start so he probably needs a little more time. My DD was hardly babbling at that age too, it only really took off after she started and mastered walking.