To ask if you had a premie?

[mscongeniality]

I wanted to post this in the Premature section but it doesn't get any traffic so posting here, apologies.

My DS was born almost 6 weeks early. He's 21.5 months actual and 20 months corrected. He's been on the later end for all his physical milestones but within normal range, ie. crawled at 11 months and walked at 16 months.

First tooth was very very delayed at 16 months! Now he's got about 9 teeth.

Everything has taken a while so I feel like I've had a baby for the longest time. He still doesn't like to feed himself so I spoon feed him most of the time. He will feed himself things like biscuits or bread etc. I'm not too worried about that, I don't mind feeding him as long as he's eating. He used to be a lot fussier about food but is getting better and trying more things.

My concern is with his communication and cognitive development. It took him a while to clap, I think he was 16-17 months and only started waving properly 2 months ago. Now he can clap and wave on command and to anyone who waves at him, even strangers. The thing that worries me he doesn't point. And doesn't have any actual real words. He babbles a lot, and will come to us and babble like he's talking and telling us things. Can make lots of different consonant sounds. Has tries to repeat a few words a few times but does it quietly almost like he's hesitant and unsure of making a mistake.

Socially he's fine otherwise, he loves going out, being around people, sleeps very well, has great eye contact and responds to his name most of the time. He goes to nursery 1 day a week for the last 2-3 months and they have noticed he doesn't play alongside the other kids, but isn't that normal at this age? He doesn't mind them he just doesn't really go and interact with them much. But he is okay with his key worker, likes getting cuddles with her after we drop him off.

His understanding has been very slow and at this stage he can understand very basic things like, no, come here, where's elmo (his fav stuffed toy). If I give him a spoon and tell him to feed elmo, he goes and puts the spoon in elmo's mouth.

Sorry for the long rambling post. I'm just so confused if he's actually delayed, is it because of his prematurity and he will catch up, or is there something else going on? It's driving me crazy. His HV has flagged him as being behind in communication at his 18 month check and he has been referred for assessment. When we saw the PAED she said she wants him to get early intervention just in case but SALT won't do anything until he's 2. So frustrating. He's had a hearing test and no issues there.

If you had a late term premie like mine I'd like to hear about your experience, thanks!

It's too soon to panic about this, in my opinion. I have two DCs, one born at 30 weeks, the other at 34. 30 weeker was slow at everything, first tooth at about 15 months old, barely ate solids until 18 months, had a handful of words at 18 months but was uninterested in other kids at that age. Age 7 he is great, no issues, very lovely and sociable, currently devouring the Narnia books!

My 34 weeker seemed to be fine initially - ate well, slept better than DS1, super smiley, totally chilled baby, hand 5-6 words age 1, meeting all his
milestones. Then lost all his words by 15 months, stopped babbling, didn't bring us things to look at or ask for help with anything, very poor eye contact by 20 months, diagnosed with autism aged 26 months.

If you google brain size at 34 weeks and brain size at 40 weeks it is suddenly clear why preemies go a bit slower than their peers. I'd have faith that your DS will catch up when he is ready, I don't think many/all toddlers are interested in playing alongside other kids at this age, he is interested in showing you things which is very positive. Not pointing is unusual (ds2 never pointed even after months of demonstrating pointing and showing him how with his hand) - maybe see if you can teach him hand over hand?

SALT will probably see him earlier if you annoy them enough - I did this and DS2 was in a speech therapy group at 18 months.

I had a 26 weeker who was delayed in lots but not everything. For eg cognitive ability on par with his peers but he was & still is physically behind. He has gross and fine motor skills issues but is improving all the time. He went from making a few sounds/words to speaking full
sentences by the age of 3. I wasn't too worried, I gave him lots of play opportunities so he could pick it up at his own pace.

I had a portage play worker visit us weekly, he then went to a sen playgroup twice weekly alongside a mainstream nursery. He is now at a mainstream school in a specialist SEN unit. He has come on leaps and bound considering the very uncertain start he has had.

Don't stress about it, he will develop at his own pace, just give him lots of space and scope to learn & explore
sentences at the age of 3.

My DS was born at 34 weeks. He had a few medical issues, and similar to yours, was on the far end of 'normal' for his physical milestones. Except for eating, but I think that was more to do with his severe reflux than anything else. Despite being a very good weight at birth, he quickly lost a lot and hovered around the bottom couple of centiles.

Communication was again, very similar to yours. He was referred to SALT by the HV at one point (I can't remember what age I'm afraid, but it was very young). We saw them for about a year, by which point he was actually assessed as being ahead for his age, and we were discharged.

In short, he is now 6 years old, on the top table in his class, and in 7-8 years clothes! He has friends, but is actually quite a shy, introverted little thing. I think that's just his personality, and I think that's a factor that's often overlooked when they're younger.

In terms of catching up, his paed said they don't really catch up, as such, it's just that as they get older the relative difference in age/ability gets much smaller. If anything, they progress slower than full-term babies at first, due to the fact they're having to develop a lot of new abilities all at once, physically as well as mentally.

My son was born at 28 weeks. The first few weeks was not like having a baby, more like having a lab experiment! It was terrifying - he stopped breathing a number of times a day, got infections, had blood transfusions. I just wanted him to get through it but I did also worry how it would affect him as he got older.
It was like having a little baby for a very long time. At 3 months he only weighed about 6lb !
But as time went on, the difference between him and his peers became less apparent. He's now 5 and in reception - it's like it never happened.
There doesn't seem to be a defined outcome that is the same for all prem babies - some are affected more than others and of course there are problems that may have occurred anyway. But I understand the worry you must have - I too had it for the first 2-3 years. I even kept his breathing monitor in his bed until he was almost 3!
All you can do at the moment is keep going with the play and learning. Is he still having his 6 monthly check ups?

My DS was born at 30 weeks but was not obviously late in anything.... my sister's DS was 2 weeks over and behind mine ( born within days of each other) in lots of things.... but caught up.... now at 8yo they are much the same and you'd never know one had been prem..... all babies develop differently and in their own time. xx

My daughter wasn't premature , but i couldn't have written the original post.

My daughter was delayed in her milestones too. Nursery brought to my attention her speech development and she was referred to SALT before she was 2. She is now 5 and still a little bit behind and is still having speech therapy . It's a long process.

If Nursery think you should be referred, go with it , it might come to nothing, but if he does need SALT then you are in the system and there is a long waiting list . If you have concerns then you can self refer.

Might be worth starting to use makaton, as a way to communicate . Again nursery maybe able to point you in the right direction . We no longer use makaton but it helped us massively.

I think you are worrying unnecessarily, OP, maybe speak to your hv about your concerns to set your mind at rest. Premies, like all babies, are not one size fits all. There may or may not be developmental/milestone delays, it depends on the baby. My first was 32 weeks, hit all his milestones within 'normal' range with some, i.e. speaking and walking, well in advance of what might have been expected. My 2nd was full term, around 39 weeks, yet took longer to start walking and (he had lots of words but he didn't want to waste them) he didn't talk a lot or in sentences until he reached around 2.

My 32 weeker (now 6.5!) was on the latest end of most milestones especially verbally and she also walked at 16 months, she was quiet and shy at nursery but did come around the same when she started school. However now in P3 she is struggling to keep up with the work in terms of writing and spelling although she is brilliant with numbers and problem solving in her head and in real life scenarios too. (In many ways could buy and sell us!)

Thank you to all of you for sharing!

The thing that annoys me now that I think about it is that ever since he was born we have not been under consultant care or been seen by a Paed until now when he was referred by the HV. Even though he was 6 weeks early, he was lucky he didn't require any NICU time. Physically he was small (2.2kg) but didn't need help with breathing and had no other issues. They discharged him after 3 days. I feel like because of that he was not on their radar for checkups. I didn't even realize that was a thing until some of you mentioned Paed checkups. And at every appointment with his HV I always have to remind her that he was premie and she has to do the math every single time. It's very annoying that he hasn't had the extra assessments that he should have been getting.

I know it's still quite early, as my DH keeps reminding me every single day, but I can't help but worry. When its just me and him at home its so hard to get his attention, but when DH is at home he is so much more responsive to him. That also confuses me.

My biggest concern is ASD but I don't know if its that or just a delay that he will catch up on. It's the lack of pointing that worries me, also he doesn't bring us things to show and share. But can follow a point most of the time and responds to name, and eye contact is good depending on his mood. Those along with speech delay are the only red flags.

DS1 was born at 34 weeks. His development, milestones etc was all normal for his corrected age when he was about the age of your DS.

However, since he started school, he's been referred for assessments for autism - he has some issues with social communication (speech and vocabulary are fine) which have become more obvious as he's got older. His social communication was within normal ranges when he was a toddler, it hasn't gone backwards, but he just hasn't progressed at a normal rate. But it's not something that was apparent

.... not something that was apparent enough for nursery to flag up when he was 2yrs old.

Regarding your son - it may be a delay he'll catch up on, it may be something more serious. If there are concerns it's certainly worth pushing for SALT / paediatricians to assess, as assessment processes can be lengthy.

I wouldn't worry at this stage (easy to say) as my dd2 33weeker was v similar. She was tiny too, v skinny and behind all her milestones however as soon as she hit two, boom! She suddenly caught up with her peers developmentally and at 5 is the tallest girl in her class.

That said, take any referral you get as you are in the system. If he catches up then grand, if he needs extra help then it'll be easier to access.

CreamCrackerundertheSettee Thank you for sharing! I have heard so many times that for premie's 2 - 2.5 seems to be the age they suddenly catch up and I'm just impatiently waiting until then.

In the mean time I'm doing all I can to keep getting him assessed. His next Community Paed appointment is in March, so close to when he turns 2. Going to speak to GP again about getting a proper full assessment done though.

Hi, my son wasn't premature but did have a difficult time after birth (too long to go into really) but they thought he had a series of lengthily seizures at five days but he was discharged from GOSH at 2 weeks with benign neonatal sleep myoclonus he was 6llbs so small for full term. Anyway I spent the first year worrying about him and just waiting / pushing him to reach milestones. He crawled at 10 months / walked at 15 and babbled late. I too was worried about a lack of eye contact although he did seem very social, shouting 'ah!' to get strangers to look and play with him etc. Anyway he is just over two now and ahead in communication, very social and reaching all physical milestones although probably a bit spoilt! The one thing I really regret is worrying away his earlier days and just wishing him into a toddler so I can see he is ok. I think to be honest your son sounds fine but I found it really helpful when a HV kindly told me that it was me with the issues from his hospital time not him! I would talk to your GP and ask for him to be assessed by a paediatrician for your peace of mind. Because ASD is something that generally presents later I think I fixed all my anxieties onto this and was really looking for symptoms of this which didn't help, I think I was constantly self testing him when looking back which isn't very helpful.

Mine was born at 33 weeks and the first two years I was constantly worrying and calculating her corrected age. But then she went to pre school and nobody believed she was premature. She genuinely was the most articulate there. Was talk away in sentences and used and understood words way beyond her age. She is 7 now and very sporty so her early start has had no impact and we are still awaiting her first cold! Having said that you should definitely get your DS checked to ensure that if he is not meeting the average milestones that he can have additional support.

I've got a 30 weeker who will be two in Feb so similar in some ways to you. He was really slow for the first year and it was such s long year with a little baby, however he's coming on leaps and bounds atm- I'd say in the last month his speech, whilst not clear, is improving massively. Our developmental paed said if we are worried go thru hv at two but she said all children do things at different rates- the last time we saw her was Nov and he had about 5 clear words. I've struggled with impatience too so sympathise there! Can u contact the hospital he was born at re follow up care if you are worried? It's a long journey with prems in learning but the above stories are lovely to hear!

I don't think late preemies (34+ weeks) who weren't in NICU get continuing paediatric checkups as standard? My DD was born at 35 weeks and didn't have to go to NICU. No-one's mentioned paediatric contact since she was discharged at 10 days old, and I would have been very surprised if they had without some actual concern. DD is only 4.5 months so too early to suspect any issues from her prematurity, but I think your expectations of continuous paediatric contact sound misplaced.

I have a 32 weeker who spent her first three weeks in NICU, so not quite the start we had planned. We waited 15 weeks for her first smile and I remember feeling such palpable relief that she appeared - finally - to be communicating. We were monitored pretty closely until she was 2 and then discharged and told to come back if there were any concerns. Apart from being on the small side, I don't think anyone meeting her today (aged 5) would guess that she was a prem baby.

It's very hard when you have had an early start not to be constantly looking for things that might not be quite right and I totally empathise with your post. Chances are everything is absolutely fine. It's a cliche, but nonetheless true, that babies do things at different rates. I'd push for a referral though. It will either put your mind at rest or lead to you getting any additional support that may be needed. Good luck!

Im going to add though i dont want to worry. One of my DDs was born at 27 weeks (1lb 11!) and was in hosp for 9 months and like so many of your premies she had delays. Later to have first tooth, to start crawling, to sit up all that. Hosp spotted pretty quickly and after regular check ups got diagnosed with dyspraxia at 2. (they obvisuly wait a bit before diagnoses.) but it hasn't affeted her greatly and apprentky dyspraxia can be common in very prem babies. and thats a point my DD was born 13 weeks early so we came of preety well with only moderate health diffcuilties i hope that helps

I agree with Frater. I don't think they routinely follow up if you haven't needed a NICU stay and there are no other concerns at the point of discharge. Take that as a positive sign...