slow development (?) in 9 week old baby

[MommyUpNorth]

Hello. I have been searching through some posts on this board for a few weeks now and debating if I should post or not. We have a lovely little boy who is 9.5 weeks old now. He was born at T+13, and seemed just as normal as any other little newborn!

However, as time ticks on, he doesn't seem to be responding to voices/faces/toys/etc. I brought it up with my HV at his 6 week check and she said not to worry but to book an appointment with the gp. We did that and he sent off a letter to an eye specialist as he wanted to be on the safe side.

Then I went to see my regular gp for the 8 week check and he still wasn't responding to the shining lights/faces, and in general doesn't seem to be focusing on anything in particular. Got a paed appointment the next day, and then had a hearing test within an hour which showed no hearing in one ear. They said that the test needed to be redone as he could of been coming onto a cold or had some congestion, so again not to worry.

Had the eye specialist test yesterday and they seemed concerned enough to get another appt with a more senior specialist who deals with babies/children, and he will also be under the watch of this current specialist. Also have the hearing follow up next week.

I'm not sure if I'm really asking anything here... maybe just reassurance from someone who was in a similar position, or perhaps some recommendations for things to do to stimulate him in other ways? We've been speaking into the ear that seems to be ok and that has helped. Also he responds well to touch, so placing my hand on his cheek seems to reassure him.

I know he's still very young yet, and will possibly develop stronger eye focus in time, but we also have 3 older children and have looked back at pics of them at similar (and younger) ages and they're all smiling and looking so alert. This little guy isn't yet smiling or looking at me, or making any of those cute little baby noises and as the time goes by it makes me more and more nervous.

Sorry you have such worries. What hearing test did they do ? There is one for young babies which shouldn't be affected by a cold etc using impulses in the ear - some hospitals do it routinely on newborns and it only takes 5-10 minutes. Sometimes they repeat it if there is an anomaly.

Hi Lizs. They did the normal newborn test, but couldn't pick up anything in his left ear, so they went on to do the AABR test with the little patches stuck on. There was nothing picked up then either. So the audiologist phoned last week just to say that he'll need to be settled again when he comes in next week so they can re-do that test, plus she'll be doing some other things to check on that ear.

Even after the 2 tests though, they still said that it could be wrong (due to the colds thing) so they'll re-test... doesn't make me stop worrying though!

Hi sorry you are going through such a worrying time.
DS2 had the test with the patches when in SCBU, The 1st test neither ear passed, 2nd test he still failed in one ear he went back for a 3rd test at 3 months & just managed to scrape above the line enough to pass.
He does have slight hearing loss but it doesn't seem to effect him.
I think the test has to be done in the perfect environment with a very settled & still baby for an accurate result.
I hope all goes well x

Re: the vision, DD1 had a thing called "Delayed Visual Maturation" which meant that at a very early age she saw chuff all. She did eventually see eg lights on the ceiling, but her first smile was for them, not for us.

She has (incidentally) a few unrelated visual/neuro problems but the DVM cleared up and her sight is much improved overall. It's not 20:20 but she can see fairly well.

Hi, am so sorry you?re going through such an uncertain time.

What did the eye specialist say if you don?t mind me asking? Did he give you any indication as to whether he thought there was a problem and to what extent? I.e. whether you ds appeared to have any vision at all? And what, in his opinion, could be the cause? You say that your ds does respond to touch, does he respond to anything else? I.e. if you put him down near a window, will he turn his head towards the light? If you walk up to him without making any noise, does he show any sign that he knows you?re there? If you make noise into the ear that he appears to be able to hear out of, how does he respond?

Sorry for all the questions.

If your baby has a problem with one ear, even if it is just a cold, it?s possible that he just hasn?t started making noises etc because he hasn?t been hearing properly and so wouldn?t automatically make noises in the same way that hearing babies do iyswim. Babies make cooing noises which they then hear, if he?s not hearing them properly,then the stimulus isn?t there for him to do it again if that makes sense. Similarly with smiling, if he?s never seen someone smile at him, that reflex hasn?t been triggered in him to do it as well. It?s not a copy reflex, but sometimes babies with visual problems do have problems with facial expressions.

I think it?s a positive in that your gp has taken this seriously very quickly and has referred you to the correct specialists for help. The earlier any problem is diagnosed, the sooner steps can be taken to help your baby to adapt in any way possible.

Try to think positive, if he currently does not appear to hear out of one ear, he at least appears to be hearing out of the other ear. Focus on that, talk to him, make sure he has lots of physical contact. Remember if he can?t see you he doesn?t know you?re looking at him, so you will need to reinforce that much more than you would with a baby who can see.

It?s possible the one ear was just blocked, or that conditions weren?t favourable for a hearing test, I?ve heard many stories of babies failing hearing tests only to pass them further down the line.

If he has a vision problem it won?t be the end of the world, really it won?t. Lots of people with visual impairments lead perfectly normal, independent lives. I have been blind since birth and I am absolutely 100% independent. I live with my dh and my 4 year old ds, and while of course there are some limitations, i.e. I will never get a driver?s licence, I do not feel my disability has ever really prevented me from doing anything.

Please let us know how you get on at the specialists. Stray strong and good luck xx

Thanks mymatemax. That's what the audiologist said about the environment, so we're due to arrive to the appointment early and are getting a quiet room where I can feed/settle him with the patches already on and then see what happens.

Thanks as well r3dh3d. I've not heard of the "Delayed Visual Maturation" and they haven't said much of anything really except that he is still young and might yet develop more.

wannaBeWhateverIWannaBe - So far, everyone looking at his eyes has said that they're 'pretty sure' he's not blind. The pupils react to light, and the spot at the back of the eye is ok. They all seem to agree that there is a problem, but they're just not sure what it is yet. He seems to be more alert these days, but when he 'looks' around, he doesn't seem to be noticing anything at all.

He doesn't turn towards a window, or lights, or any toys... For example, we have a kick and play piano which all the older children adored at his age. If I set it over his chair, he is staring at the ceiling or off to the side and doesn't even look to the toy dispite the flashing lights/songs/etc... He doesn't notice if I walk up next to him, nor does he notice if I enter or leave a room. He makes no fuss if I walk away to put on a load of washing or whatever where the other children would normally start crying... they all lived it a sling for the early days!

If he's crying and I sing into the ear that he might be able to hear out of, he sometimes quietens. But more often than not, that doesn't work. Yesterday he was on his mat in the bathroom while I was having a shower, and he started to cry. I started talking and singing to him with no response from him. When I got out (still singing!) as I walked closer to him he still was crying. It was only when I put my hand on his cheek that he stopped. So I'm not sure that he hears all that well from the 'good' ear.

Thanks so much for all the other info in your post. We are trying to stay very positive about this all, but one frustrating thing is that without knowing what is wrong, we don't know the best way to stimulate him at the moment. I spend a lot of time touching/holding him, and just holding his hand to let him know I'm near him, but we don't know what else to do to help with his development.

Sending you hugs, I hope you find out soon. Sorry that you are having such a hard time.

My dd is now 15 months and is profoundly deaf in both ears. She failed the newborn screening twice, so we were referred for the further tests where her deafness was confirmed. We found it very hard to comfort her initially, because she obviously did not get reassurance from any sound. It helped her to have a light on at night, so that if she woke, she did not get very stressed immediately. She also needed to be held or touched a lot. With situations like me being in the shower or driving I just had to grit my teeth and keep going if she got upset as I couldn't chat to her to calm her down. Once she was a little older, probably a similar age to your ds now, she was always lying on the floor so she could see everything, she hated the bouncy chair as she couldn't see behind herself. She also hated being breastfed as it obscured her vision.
I hope this is of some help (though reading it back not sure!). The NDCS website has some useful info re hearing loss if this is confirmed. Good luck with it all x

Thanks Mitchell81. The hugs are much appreciated.

Thank you catrin for sharing your story. I agree that it is very hard to just let them get so frustrated when in the car or I'm in the shower, etc... but there isn't much else to do. I make sure he has his little blanket next to him (it's been his since birth so I hope he can sort of recognize it) and try to be as quick as I can. I will have a look at that website later this afternoon.

Catrin, did your dd have any other 'symptoms' which made you think she couldn't hear, or was the hearing test done straight away after birth and therefore you got the diagnosis quickly?

She failed the tests at birth, but they said could be due to external noise, fluid, it was a borderline fail etc so we didn't KNOW she was deaf until the further tests were done. She had hearing aids by 9 weeks. Signs are difficult, as obviously with hindsight we recognise more stuff as being possibly linked to her deafness. She startled easily, eg if you sort of loomed over her in her moses basket; she responded well to being touched; if she couldn't see anyone she would get very upset, eg if she was left on her own in a room for a minute; she liked to be held so she could see everything and if she was lying on my lap would try and dangle her head off my knees so she could see; her eyes were very busy, darting around a lot.
These are just my honest experiences, please do not think these are medical markers or things to watch out for. The tests will confirm everything either way and then at least you will have some information.
My dd is fantastic and I would not change her for the world, she is who she is and we are proud of that. Her signing is good, she is friendly and loving and funny and if we had known then how she would turn out we would not have been nearly so scared or worried. Let us know how the tests go next week, in the meantime, just enjoy him!

Hi, my eyes themselves were perfectly normal when I was a baby, pupils were reactive and I have perception of light so I responded to that. In fact the consultant said that the eyes themselves were seeing but that the problem was further back, no problems were detected with my optic nerve so it is assumed that the problem was somewhere in the brain and that the messages themselves just aren?t getting through. I have never had an actual diagnosis as to the cause of my blindness, no-one actually knows why I can?t see, despite the fact I had numerous tests as a child, eye exams, brain scans etc, with no result.

If your ds is having problems with his sight as well as his hearing, it is of course going to be difficult for you to comfort him/help him to develop. If he?s not responding to toys with light/sound it might be worth trying more textured type toys, rattles with lots of different things on them/those caterpillars/octopuses with the different legs with all the different textures, and as he gets older, lots of emphasis on toys with lots of different bits i.e. shape sorters etc/toys that have lots of different movement and/or those toys you can buy with different shaped buttons that you press to make animal heads appear or whatever it is that appears out of them. And of course the touch is vital, if he can?t hear you properly, he can?t hear you talking/singing t him, if he can?t see you then he can?t see you looking at him, so you need to pick him up often and comfort him that way, also by talking to him when you?re holding him he will feel the vibrations through your chest and this could also act as a comfort to him, similar to how it would have felt for him when he was in utero.

Can I ask, did you have a normal pregnancy? Is there any chance you could have been exposed to anything like Rubella when you were pregnant?

Please let us know how you get on next week.

Good luck xxx

As your little boy responds to touch you and he might enjoy baby massage and stroking on a regular/ frequent basis. Its something his older siblings could get involved with as well and he'll get to know their touch and smell etc as well even if he's not seeing / hearing them as well as some do.
at about that age my boy liked being face down on our laps and being patted rythmicly, he found it very calming. We refered it it as playing bongo baby :-)

Don't know if this site would be of any use to you. Sending lots of hugs your way and hope that you get some answers and all the support you need.

wannaBeWhateverIWannaBe - thank you for the toy suggestions and other tips. Regarding the pregnancy, everything was normal enough. I had a possible urinary tract infection towards the very end, but it was an odd strain which the antibiotics for were too strong, so they waited until after the birth. He was term +13, and the birth was quick, but I had a bleed afterwards and a transfusion. He had a lot of blood in the whites of his eyes, and was born with the cord round his neck twice, but they said that this wouldn't be the cause of anything as he was absolutely fine.

Writing this out to you just made me remember that I had a course of antibiotics after the transfusion as I was still bleeding. The doctor said that they weren't recommended while breastfeeding, but the good outweighed the bad... I'll have to bring this up at the next appointment and see if this drug had anything to do with anything...

UniSarah that is a great idea about the baby massage, and I've been doing it and he's really enjoying it. Thank you so much for the suggestion.

Lori21, thank you for the website link. It does look very good. Full of lots of info, and if he does have any vision or hearing loss, then it will be very helpful.

hello

Sorry that you are going through such a tough time.

Have you heard of something called tac pacs? We got some for our dd from our CDC. Basically its just various household items - wooden spoons, scourers, sponges etc and you use these to massage / tap yr child with. (LOL Massage with a scourer sounds pretty horrific - tis not torture or child cruelty tho, I promise!) Its a way of introducing different textures / sensations to a child. Its set to music, which even if the child doesn't benefit from, helps you keep the rhythm / momentum going.

If you would like, I can send you cd of the music and the instruction sheet. You just need to go to the pound shop and pick up the bits and bobs used. Let me know yr email and I'll mail you

hi, when you say your ds had blood in the whites of his eyes, was it blood from you, i.e. physical blood that could be suctioned out, or was it blood from the blood vescils that can burst if under pressure so as to make the eyes bloodshot iyswim?

If he had blood in his eyes I would certainly query whether this could have caused retina damage.

When your ds saw the specialist, did they do a thorough check? did they dilate the pupils with drops and shine lights into the backs of his eyes to check that the retina was ok? also, was he seen by an optometrist who would have checked his ability to focus? what they do is hold a card close to the baby's eyes, the card has various lines on it, and the test is to check whether the baby's eyes react to what is on the card. I can't explain it any clearer than that I'm afraid, but it's a test that your ds should have been given at this age and which he would be able to be given. My ds had similar when he was 6 days old.

I would push for all those tests, not just for a torch to be shone into the eyes to check for pupil reaction.

wannaBeWhateverIWannaBe - The blood was in both of his eyes and quite bad, but it was his own from pressure built up during the birth. We asked early on if this could of been the cause of anything to do with sight and were assured that it wouldn't cause any damage to the eyes and would clear up over time. I will certainly ask again though.

The specialist did the light into his eye to check for something and both times (2 different doctors) was ok. The next appointment he will have the drops done (later this month hopefully).

He hasn't had a card in front of him to check what he can focus on. The specialist picked him up and spun him around about 3 times and then was trying to see if his eyes were sticking to one spot after each turn? I've not seen anyone do this test before, so it seemed a bit odd!

I will ask about the other tests and see what they say. Thanks again for your help!

ejb1976 - I think I may have heard about this, but didn't know what it was called. Our HV actually has recommended it and was going to get a copy for me to try out. Thank you very much for the offer though, and if she doesn't come up with one, then I may contact you shortly.