HIE (lack of oxygen at birth) and ASD link

[slowburner]

i know I am new here, and I've asked a lot of questions and have little practical experience to offer on posts so apologies for the taking not giving.

I am trying to understand our possible future, we are lucky 15 mo DD survived her birth and that she is mobile, feeds herself, communicates in her own way and is generally a happy soul. However the fact remains she is at a much higher risk of both epilepsy and of CP. Researching today I happen across a paper which indicates there is a correlation between birth trauma and autism.

We've been told it is a waiting game to see how DD may be affected but I'd rather know the risks and then hope we avoid them than not know the risks and have them blindside me years down the line as I'm caring for one or more younger siblings. Hope that makes sense.

Has anyone happened across this information before? Tyia.

I think Starlight has started a thread previously on this. My DS also has a traumatic birth and has ASD.

Thank you mango monster, I'll try o find it.

Mine both had birth trauma and both have autism.

Our paed tells me not to google, but if I didn't how else would I find out what may occur?

Can I ask what age your children started to show ASD signs? I am watching DD like a hawk, poor child, doesn't help me sleep at night.

12-18 months but didn't realise until around 22 months.

I think any type of neurological damage increases the risk of ASD.

Have you heard of the M-CHAT test? We used it to screen dd who was at increased risk since she has a sibling with an ASD. She passed it at 15 months & is clearly nt and we will use it again with ds2 when he's older. ds1 didn't seem much different to his peers at 18months - just a bit more 'babyish' - but with hindsight he would not have passed the M-CHAT at that age.

The watching & waiting is really hard, we've been through it once with dd & now again with ds2 (a 1 in 3 chance apparently).

looking back the signs for my girls were there very early. Both were physcially delayed and both had extreme baby behaviour eg: one screamed all the time, the other never cried.
The signs became alot clear about 2 years

My dd4 was second twin , very distressed and had trouble because her brother got stuck on way out.( presented ear first ) . Dd4 was born breach in caul and was taken away with them just giving me and dh a quick flash of her ....we waited ages not knowing if she was ok , she never cried . Eventually they came back and told us she was stable on oxygen and in incubator. Didn't see her until next day as she was too poorly.

Definate oxygen deprevation , she has asd ,gdd , growth problems ,eyesight problems . I suppose it must be brain damage as all her genetic tests came back normal.

Feel guilty , I was offered a section and refused it.

DD2. normal, quick birth, no problems at all.Lovely baby, very happy and settled (normal amount of screamng). Aspergers.

Hi,
We have been on that road too, birth trauma, endless appointements ever since. She is 4.5 and has been recently dx with ASD, amongst other things. She has long had gdd, and one definite clue for us that she has autism was the tantrums and rigidity in her behaviour.

It seems ever since her birth we try to take it one day at the time, but still some days are easier than other. These days she is speaking more and doing ABA so we have still moving forward, and that is what counts.

birth injury, cp and no asd here. it didn't stop me worrying about it though, and i had a huge tendency to pathologise her every behaviour. for about two years i was convinced she was on the spectrum.

she isn't.

she just has cp.

her asd-ish quirks were just a result of the brain injury, and have been de-sensitised away.

there are kids with birth injuries and no asd. there are kids with asd and textbook births. there are kids with birth trauma and asd, and there are kids with no birth trauma and no asd. impossible to predict, but very easy to torture yourself for years with no real reason.

my birth trauma baby does not have asd. one of my non-birth trauma babies is nt, the other one of my non-birth trauma babies has un-dx as/add/adhd/odd/ quirks.

really, no link has been proven. it won't stop you worrying about it, but only time will tell. and step away from google! google told me my child would not walk (well, to be fair, so did the docs). they were both wrong.

there may be a slightly higher risk due to the brain trauma, but i really wouldn't waste any energy worrying about it. whatever will be, will be, and all that.

oh, re the epilepsy thing - we were also told higher risk of epilepsy (dd2 had neonatal szs and was eventually weaned off meds. sz free since). a repeat mri at 4 and a debrief with the neuro who talked specifics about areas of damage etc, said the area normally associated with epilepsy was undamaged in dd2. no guarantees, but much lower risk of epilepsy than the generalised 'higher risk due to cp' stuff. prior to that (for four long years) we were all watching like a hawk for absences etc. and spotted lots of really worrying symptoms, all of which were figments of our imagination.

Does anyone have a link to the paper, it would make a very interesting read.

DS2 had birth trauma. In fact his head is still misshapen from the ventouse delivery :(

I agree with some of the other posters. I 'knew' something wasnt right from very early on. He constantly screamed as a baby, wouldnt sleep, didnt feed well at all. He didnt sit until 9 months, didnt walk until 23. Lost all his language by two, and before then he could say 2 or three word sentences.

He never played with anything and he never seemed happy. No pointing, no gestures, no eye contact.

My son didn't have a traumatic birth but was born with the cord wrapped around his neck. His uncle has autism too though so I think it has more to do with being passed down in his fathers side than the birth IYSWIM.

Does your DD have any specific brain damage on an MRI?

If not and her mobility it good, crawling, pulling to stand, toddling in a normal manner I would not be too worried about CP, there are signs from early on and if she displays none now it is unlikely unless she was a prem. She won't 'develop' CP years down the line unless it is incredibly mild and becomes more noticeable with age and growth.

Did she fit at birth? This increases the risk but the majority still progress normally and do not develop epilepsy. The area in the brain damaged is also a pointer to epilepsy as madwoman says, and the bit damaged first with HIE is the basal ganglia which is generally not linked to epilepsy.

The ASD connection is even more theoretical with no solid research, (unlike the CP and epilepsy side) but is certainly a possibility anecdotally. If DD is sociable and interactive it is unlikely now, unless she developed the regressive type of ASD at around 2 yo. That itself is a less usual presentation of ASD so I would try not to worry too much (almost impossible if you are a mum!) Be aware of early signs

CP stiffness of the limbs, poor motor control, not meeting milestones.
epilepsy, vacant episodes, limb twitching, abnormal movements etc
ASD eye contact (not always though) play habits, interacting with carers, distress.

From your post DD has hopefully escaped unscathed, which gladly most babies do

ds2 was born very prem, he has mild CP & ASD. He was a very differnet baby from the NT one, he was silent almost non responsive. Brain damage/trauma can show in many different ways, one of them being ASD.
Many asd children have textbook births.

I guess it is just a watch & wait game, no fun i know.

Yes, my DD has widespread brain damage with a grade II HIE dx, she stopped breathing in my arms at six hours old although many key signs were present from birth they ignored them and instead placed her on the post natal ward with me with no monitoring. It was instinct which got her brought to me where she turned blue, she then started to seize and was cooled a few hours later after infection had been ruled out. We have since learnt that she could have escaped injury if she has been delivered by a section after I arrived at hospital heavily overdue after no fetal movements all day and thick meconium when they broke my waters to induce. A two hour trace showed pathological movement, I delivered in 4 hours with a aggressive ventouse exacterbating the damage done about fifteen minutes before delivery when she got stuck and her oxygen supply was cut off.

She has had seizures at 5, 10 and 13 months all caused by throat infections and sudden fevers, all have required hospitaliasation and one landed us on hdu when it took over an hour to stop the fit and longer to stabilise her. She had development delay of about two months after that fit at 10 mo them she was really very very sick, with paralysis remaining for over a day.

DD also has a right side weakness although she can use it and does with a restraint on her left she doesn't be default bring it into play. She is also stiffer than your average baby but able to crawl and walk, she has no words but communicates well and understands a lot. DD also has quite noticeable microcephaly and her head is a different shape to most children, much more like an adult head. Our physio has said hemi CP but I disagree.

sneezecakesmum v interesting what you said about the areas of the brain which are affected and may become epilepsy, I'll ask our neuro about that. Thank you for your words of encouragement and advice everyone, means a lot.

slowburner, when you say you 'disagree' with the hemi dx, do you mean you disagree she has cp at all, or that you think it affects her whole body rather than just the right side? (sorry, i couldn't work it out from your post). how is her feeding? does she have oromotor issues? (just looking for other reasons for the speech delay - you are obv thinking this is a pointer for 'asd'?, whereas i am thinking it is another aspect of her 'cp' (and a potential clue that a hemi dx may not be the most appropriate))

we got dd2's cp dx changed at 4 to better describe the type of cp that she was then presenting with. so this is an option for you if you are not convinced that the hemi dx is entirely accurate. different consultants dx in slightly different ways though.

I disagree that she has CP at all. DD has no oral issues, feeds herself using cutlery using either hand although the right is a bit clumsier but she is very greedy er food motivated and we use dot use peas, sweetcorn and raisins to encourage the development of her fine motor skills. DD also eats what we eat, no puree, did BLW fir the motor skills but did have to step in with blended foods when she lost weight due to illness. Looking back I wish I'd ignore the dieticians and just trusted my babybt ieat what she wanted, since we did that the colic symptoms have vanished and she is no longer constipated. She is also still breastfed.

There is no doubt in my mind that she suffered a developmental delay after the really nasty seizure, it was eight weeks before she went back to being my baby if that makes sense and so I think she has been busy catching up, the hemi dx was a bolt out of the blue given the physio was in her previous visit months earlier after the 'bad' seizure about to discharge DD. Portage are not convinced she is a hemi kid, mainly because she has such a normal range of function.

but she has widespread brain damage and a right sided weakness, and some stiffness?

ok. it's great that she's so motivated, anyway - she sounds as though she's getting on really well, whatever the dx. and a great eater! (did she have any trouble with thin liquids at all?)

i don't think the physio can dx in any case - they treat what they see, and may advise the paed or consultant that the symptoms are in line with hemi cp, but they are not a dx authority themselves.

it would be interesting to see the neuro and ask their opinion - based on the mri and presentation at the clinic, the neuro would be able to give you/ rule out a dx. (of the cp - obv not any as/asd dx) as well as any advice regarding szs.

a decent neuro would also be able to look at a recent mri and give you the timings of the brain damage too - so you would have a good idea of what damage occurred at birth, and also what (if?) further damage occurred later with the 'bad' sz?

we sacked the dietician after the first appointment. waste of our time.

Nope, no trouble with liquids. To look at her on paper there would be no doubt that she was most likely to develop CP, but the cooling treatment which she had does seem to be changing the predicted outcomes of HIE babies. She hasn't had the perfect outcome, some babies I know of walk away without a scratch neurologically speaking, but other do not have such an outcome.

I'm just quite frustrated with wanting to get access to therapy which could make a real difference (even go private) but not able to find suitable practitioners. Portage has been a godsend, utterly awesome.

At the end of the day if she develops CP then so be it, it will most likely be mild, but I think it is too early for the physio to be saying such a thing while at the same time saying there is nothing we can do to change her movements and not give us any exercises.

We see the paed in two weeks and I intend to ask him about another MRI and also about the CP dx from the physio and what he thinks.

it would be interesting to hear what he says - randonly i appear to have carried this conversation over onto the cp thread, sorry, i think i answered you over there thinking it was this thread.

i was wittering away to myself about shoulders, i think.

you know that the cp dx might give you much better access to therapy? even if later on the dx isn't necessary? might that be what the physio is trying to do? sounds a bit bizarre saying they can't provide exercises and the movements can't be changed though. i'd def be questioning that with the paed. there are gazillions of exercises that can improve mobility and function.

we loved portage. dd2 was soooooo nosy, and would play with the stuff and then go for the bag to see what else they had brought with them. it was when her sense of humour was first noticeable as well - she would deliberately try to put the wrong shape in the hole on the peg board and look at them with a big grin as if to say 'come on then, say 'noooooooooo, try again' ' and then make her way down the board, pausing for effect at each space, and waiting for a response, until finally gleefully putting it in the right space at the end. total comedian.