Here some suggested organisations that offer expert advice on SN.
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dd4 had a stroke at birth(26 Posts)
Hi I'm new to all this but have been reading these for years.
We had our 4th daughter 14 weeks ago and unfortunately when she was born she suffered a stroke. We have been told to expect her to have cerebral palsy and learning difficulties to name a few. We don't care what she in the future but were looking for some info or advice on what we can expect
Thanks to anyone who helps
Oh so sad :0( I hope someone can help.
No one can see into the future so remember that in the bad days. Undoubtedly she will suprise you. You will suprise yourself. Never doubt that
Hi thank you she has a physio that sees her every 2 weeks and gives us excercises to do, to help her use her right hand and foot, strenghthen her neck etc. She has a consultant also who is keeping a check on her progress.
We take each day as it comes and are thrilled when she achieves anything. She has just started reaching out to toys with both hands ;)
Congratulations! Doctors are very good at painting a bleak picture, sometimes they are right but very often they are wrong.
The truth is at such a young age it really is too early to tell particularly with regard to learning difficulties.
Early intervention will help & reaching is a very good sign, she is still so young.
ds2 has cerebral palsy, autism & learning difficulties he was 3 months premature. Without a doubt his best therapy has been all the usual rough & tumble & play with his big brother, it can be hard when they have had a rough start not to wrap them in cotton wool, but they are tougher than you think and I am sure she will surprise you all.
Op it sounds as if your dd has hemiplegia if right arm and leg are affected, there is a really helpful charity called Hemihelp which was set up to support parents and those affected by hemiplegia - usually caused by strokes. There is a website, forum and lots of other stuff which may be really useful for you.
My daughter had a left MCA stroke at 23 days old. She is now 7 and is doing much of what the "professionals" said she wouldn't.
What I was told then vs what we know now are so different as to be unrecognisable.
I am sure you have about a million questions, I can help, but I can also promise you that every child who has a stroke is SO different that you can't count on anything I say. Well, aside from your little girl is beautiful and perfect - even if she has been presented her challenges early.
Hi thank you all for your support
Mymatemax:at the moment her pediatrician isn't telling us much. When she was in the nicu the doc in there told us what to expect. Your right about wrapping them in cotton wool. My girls are 5, 4, and 19 months. They keep trying to play with her and I keep thinking they going to hurt her head, silly I know.
HarlotOtara: thank you for that sight I will get a proper look at it tonight when kiddies are in bed.
BeeMom: our baby is in the left mca territory too. We only just got a letter saying that, we seem to be getting no info from the docs except wait and see. They cannot seem to tell us how it happened. I think that's the case for most people. My waters broke way before I went into labour and no one picked up on it. ( kept telling them I was leaking fluid) ended up having an emergency c as her heart rate was very fast, cord was tied around her feet. Both of us had an infection from waters. I think this is what caused the stroke. Did your daughter see lots ofhealth professions, dd4 also has a speech and language therapist and a diet and nutritionalist which we don't see yet because she is too young. Does your daughter go to main streem schools? Does she have any problems with her right side. Does she have any learning problems? If you don't want to answer any questions I totally understand. It's a very personal situation.
Thank you all for your help and support :-)
I will answer every question I can, but please remember that our journey and yours will likely be very different... I figured when you said what was affected, it was left MCA - do you know if it was a clot or a bleed? Bee's was a clot. Because it was a clot, they did a coagulation workup on both her and me (to see if I passed something to her). In the report it may identify it as haemmorhagic or ischemic (the territory generally gives it away). Ischemic is usually a clot, and is associated with a complete area along an artery's path. Bee's stroke territory was large, it involved her left frontal, parietal and temporal lobes, and effectively destroyed 1/3 of the left hemisphere.
Did your daughter see lots of health professionals
Bee has a ton of professionals now, but related to the stroke, she saw 2 neurologists (one for epilepsy, one was stroke specific) and she had a gastroenterologist fairly early because she had awful GORD. We added ophthalmology when she was 4 months old as she has very poor vision. She saw OT to make sure we had adequate positioning for her (she developed positional plagiocephaly so we had to be careful about head positioning) and to encourage use of her right hand, PT for her neck muscles and to help with strength, and SaLT because a) the "traditional" speech centre is in the left temporal lobe (and hers was decimated) and b) because her swallow was uncoordinated and she was aspirating. OT worked with feeding as well.
Does your daughter go to main stream schools?
The short answer to that is "sort of" She went to a SN nursery, then started school in mainstream with 1:1 nurse and aide (she had 2 staff to herself, one medical, and one educational). The following year, she was transferred into a fully self contained developmental class, then, for the last 2 years, she has attended a hospital school. Next year, she is beginning her transition back into MS (2 days a week, and will be 3 days in the hospital school), but it remains to be seen if she will be able to cope. She still requires 1:1 nursing, but in the MS class will be sharing an aide next year.
Does she have any problems with her right side.
Yes, if you REALLY look for them. When she was 9 months old, she was diagnosed with hemiplegic CP, but by the time she was 2, her CP was more of a mixed type diplegic pattern (both legs are affected, as well as both arms). She shows signs of spasticity in her limbs, hypotonia in her core, and ataxia. She is showing limb length discrepancy because of the higher spasticity
Does she have any learning problems?
Short answer, yes. She has cognitive impairments. HOWEVER, I attended university with a girl who had had a neonatal stroke, and she was very bright. Learning problems are possible, but not definite.
NOW... this is important... in Bee's case, the stroke was a symptom of a larger problem. For the first 2 years, even though the pieces didn't fit, everything was blamed on the stroke. Then, when we moved and she ended up under the care of a new team, the fact that things didn't add up came to the forefront, and her new neuro started looking further. The answer wasn't something we wanted (it is degenerative and terminal) but it is important that you don't assume that your dd's journey will mirror Bee's. She has caused so many docs to shake their heads and say "don't know". The fact that your dd is using her hands together is VERY encouraging. Play and being involved with her older sisters will be the most important therapy she can get, both physically and cognitively. Try to avoid the cotton wool - her head is no more sensitive that any other babe her age. The more you protect her, the harder things will be for her when she gets older...
I hope this helps - and will answer (here or privately) any other questions I can.
I am so sorry to hear that about your bee. I hope she keeps well and her progress keeps improving.
So far we have not had as much info as you have. We know it was a clot that damaged the whole of the middle part on the left hand side of the brain. We don't know what that's called yet. The problem we have is the hospital she was born in didn't have the equipment to deal with her( they didn't know what was wrong at this point, just that she kept stopping breathing) so she was transferred to Edinburgh simsons nicu. So the docs and MRI specialist we first dealt with were there. When she got transferred back when she was better but still beingtube fed we got a new pediatrition, she is nice but never really gives us the answers we want. All the info we have has mostly been from searching the net.
No advice, just wanted to say so sorry to hear this has happened to you.
Is your paediatrician a consultant? If not then you need to request to see one. It's been said on here many times, you are your child's best and only advocate.
Don't settle for professionals you're not happy with - make them make time for you and at least tell you they can't answer your questions rather than fob you off.
Congratulations on the the birth of DD4
We don't know what caused my DDs CP but she is a lively 5 year old who uses a walker due to her spastic diplegia.
There are a load of us on
With different types and causes of CP
Hi yes her pediatrition is a consultant. We seen her on the 18th May and don't see her again until 2nd Aug. This time when we go I am going to have everything I want to know written down. I don't like the way the pediatrician tries to sugarcoat everything, I prefer to be told things as they are no ifs or maybe's. We keep being told that her brain is 'plasticy ' and can change but after her 2nd MRI the brain images are still the same, which we totally expected. She is our 4th child and do notice slight differences, we do know she will have weakness on her leg and arm but don't care, its like all the docs think we will get upset if they admit what we already know.
Anyway sorry for the rant, thank you for the link, will have a look tonight.
Taking a notebook with your questions written down is a great tactic. Also make notes whilst you're in with the paed as it's so easy to forget things.
There's nothing wrong with saying you want the unvarnished truth. Knowledge is power.
However I wonder if what you think is sugar-coating is them not really knowing the outcome yet? Docs don't like to admit they don't know things but so much of medicine is 'wait and see'.
A good physio really can work wonders, it may be worth you looking into whether more frequent physio sessions might be useful.
Yeah I think being able to go over what the paed has said over and over again will help me to understand everything she has said.
My husband thinks I shouldn't find out too much about how it happened as he is worried that I will blame myself. Can't help myself tho.
Her physio is great, she is always giving us advice on ways to get her to 'remember' her right hand is there. Dd started rolling onto her side this week and today nearly on her tummy. ( we will need to put the Moses basket away now :-( We have her physio tomm and then again in 3 weeks as she goes on holiday but I think I will mention to her about seeing her more regular.
One doctor sugar coated things for us - he said "if a child has to have a stroke, the earlier the better, as they can rewire".
That was the logic of "then", but now, there is a very different view. Yes, the brain's plasiticity is true, but if the home of a vital function (like language) is destroyed in early infancy, the brain will reallocate other portions to take over those functions, but not without a price. Dr. Maureen Dennis has studied this extensively, and concluded that infancy can actually be very damaging, as the areas that are seconded to rewrite reallocated functions were originally intended for other use, and their functions may well be pushed out.
We are seeing this with Bee - challenges with executive function and impulse control, cognitive and processing delays/disabilities, but an expressive vocabulary that outstrips her receptive by years. She has developed an extensive vocabulary but cannot understand and process 2 step instructions. She cannot count with correspondence or read facial expressions, and has significant anxiety and autistic features.
They are not sugar coating, but the honesty is that no one knows what is going to happen - if they give you a grim picture, you may not push your child to succeed, if they tell you it'll all be OK, and it isn't, they will be blamed. Not a good situation for anyone...
I didn't know that but it makes sense. One part of the brain taking over a function its not meant to.
It is something I do worry about, her not being able to process simple instructions but I'm sure I will find the strength to cope with whatever hurdles come her way.
Had the physio out today and I think she made a bit of a slip up. She had a student today and when she was talking to her she was saying things like ' babies with hemiplegea (dont know the spelling) show signs of this'. So at the end of the session I said what is this word you keep saying mean? She stuttered and said 'oh have you not seen paed since her mri'. No all we gotwas a quick phone call saying nothing had changed but physio said that the MRI indicates hemiplegea cp. What does this mean? Has she been diagnosed as cp or not? What happens now?
We don't see the paed until 2nd Aug.
Sorry for all the questions
I did a short project as a student which included looking at some series of MRI scans done on children who had had large neonatal strokes. The good outcomes that were described to me for children with large areas of brain "missing" I found amazing. The affected area won't recover but the plasticity they have told you about is what should allow good development. Nothing like as devastating as a similar event in an adult.
I have followed posts in another forum by someone with a similar story to yours, their son is now maybe 3 or 5 and doing well, walking well and although they still do lots of exercises to help his "bad" arm he uses it a lot. They have really appreciated the charity "Hemihelp" and on that basis I'd recommend it.
Predicting actual outcomes in these children is fraught with difficulty which I think can lead to you feeling you aren't getting answers you need or being "fobbed off" - just keep asking for explanations. Remember that a lot of the professionals you may see most off, such as physios and OT, will have experience working with children with various problems but their training doesn't teach them as much about the neurological stuff; if in doubt trust what your paediatrician/neurologist tells you.
By the way, the actual stroke event could have happened during labour or in early life, but could also have happened earlier. The early scans may or may not allow your doctors to estimate the timing more accurately.
I suspect that the main reason for repeating MRI scans now and later is to confirm that what happened was a "one-off" incident, and assess whether the healthy parts of the brain are developing normally.
Very best wishes for the future!
Melmo, firstly congratulations on the birth of your DD
My DS1 has quadriplegic CP but caused by birth injury not a stroke.
I really recommend you buy this book it gives really helpful advice and exercises you can do with her.
I know you want answers, it will help you come to terms with what happened, you can request a debriefing with the hospital and have a look at her notes. But when you have done this put it behind you, blaming yourself won't change anything (after nearly 5 years I've come to this conclusion)
Spastic, ataxic, athetoid, disconnetic, hemiplegic, diplegic and quadriplegic are all under the CP umbrella so if the paed has mentioned C P to you I think they are saying that she will have CP but not sure what type or severity just yet.
CP in itself doesn't progress or get worse, it does however evolve, for example DS 1 was initially diagnosed with spastic quadriplegic cp when he was 1 he's nearly 5 now and the diagnosis has changed to athetoid.
So what you see at first may not be what is the end result, this is why predicting what the out comes may be are so difficult.
Hi I don't actually know what all the different terms mean. I know that hemipligic means half and quad means all limbs and diplegic I think means legs only but the rest I will have to look up. If you don't mind me asking what does spastic quadriplegic mean. Does that mean no use at all, will have to get searching google.
My dd is described as a spastic quad
She walks and talks and attends mainstream school
With the help of afo's and a wheelchair(although she is as stubborn as a mule and will only use it as a last resort ATM)
Key word - physio through play at this age.....swimming.....put her name down for riding for the disabled (now , as there is always a huge waiting list)
And finally enjoy, remember you are her Mum and you know best!
Can we put her name down for that as no one will confirm to us that she is disabled. Our way of thinking is that she has had the stroke and has irreversible brain damage and that makes her disabled but the paed said that she is not until she doesn't reach milestones and unable to do things. Also our family has told us about dla but were not sure as she is so young and no one will tell us if she is classed as disabled or not!
My sister, now 23, had a significant stroke around the time of birth.
As a baby she noticeably was very stiff and missed milestones. Beginning school she had 1:1 support, but caught up slowly in all areas. She was very very difficult to dress or bend and required splints on her legs in primary.
To cut a long story short she now runs marathons and has a first class honours degree obtained in the normal time frame from a good uni. Into adulthood the lasting effects are mild, a stiff ankle that does not go beyond neutral (operated on at twelve though to lengthen the tendon). Her balance is ok for day to day but certain tasks, eg forward rolls or walking on a beam are not possible. Few people know she has had a stroke and she has never been classed as disabled nor as having cp. Her high muscle tone is nearly gone, but has left her with reduced flexibility.
Most of the (very) bleak picture painted did not come to pass. She had no behavioural/ social issues as predicted. She was simply a slower learner in early school, probably this was impacted though by being prem and pushed into the year above by this.
Melmo. children who have strokes dont always have learning difficulties, in fact not usually I would say. Hemiplegia is usually tight muscles on one side of the body. Hemiplegic children almost always walk and go to mainstream school, usually needing help with using both hands together and achieving a more normal walk. They usually wear a plastic splint (AFO) on the affected leg.
The doctors always paint a bleak picture as everyone says, and it is usually never that bad .
I think that part of the difficulty is the your Doctors and Physios won't actually know how your daughter will develop. Yes, the MRI shows something (definitely worth clarifying exactly what) but some children who show significant strokes on MRI can go onto develop normally, and others sadly don't. What I would concentrate on is what your LO is like now- you mentioned some right sided weakness, so to be working on her exercises and giving her lots of tummy time. It's really hard but if the Doctors gave you definite answers when she is so young they'd probably we wrong. Early intervention and therapy can be really effective so it's worth making sure she gets that.
We give her her excercises 3 times a day for around an hour a time. Lots of tummy time to lean on both hands, helping her roll to and from both sides, masaging her hand and stretching it out, having her sitting while holding her elbows so her hands stop her from falling. Lots of talking to her so she will make noises which she doesn't do a lot of. We do as much as we can to help her which can be hard with 4 but will be worth it for her.
Thank you to everyone for all the support and info, it has helped us alot
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