Hi All

We found out 2 weeks ago that our lovely baby boy is deaf,????its really shocking news and I can't tell you how sad we all feel (we have no history of deafness in our family).????????

Our little boy is 7 weeks????old and I feel I should be putting him in some sort of routine as we are all over the place at the moment, but I just don't know where to????start as I feel it could be different for a deaf baby.????????

Our little boy????has been fitted with hearing aids (which he will wear for the rest of his life) but we have been advised not to let him sleep in them.???? Before we found out that he was deaf I said to my husband that every time we put our son in his Moses basket he seemed to panic, now I am wondering if it was because he needed to see us to feel safe.???? As a result of this and because I breastfeed (he is a hungry baby????more often than not every????two hrs)????it was easier to have him in bed with us and then transfer him to Moses basket but only when he was asleep.???? Sometimes it works, sometimes it doesn't.???? I????have tried putting in his Moses basket after a feed awake and leaving him, last night he was awake for two hours and didn't drop off, so came back into bed with us and went off to sleep moreorless immediately.????????I am suffering because I am running low on sleep and also still trying to come????to terms with the fact that he will be deaf for the rest of his life and also being a first time mum its all new to me.????

I would????really, really appreciate any help that????anyone can give me, especially anyone????with a deaf????baby.????

Many thanks

hi ali

sorry to hear about your baby boy's deafness... it's a lot to deal with but just take your time with it and learn to grieve for the little boy you thought you had.... this one is just extra special! you will get through this... in time. :\) could you not get a swinging crib or use your cot in your room or borrow one from someone maybe? I never liked moses baskets because I couldn't see daniel.. I found a swinging crib good. if it's ok with all 3 of you why not try co-sleeping? if you don't feel comfortable with that have you tried expressing yet? maybe your dh could do a feed in the night?

wendy x mum to daniel cp 13 months & pregnant 9 weeks + 1

hi Ali,
sorry to hear your news. It must be a real shock to you. however, I have come to the conclusion that practically every young family has something to contend with with one of their children. In our case it is eczema, which came on when my daughter was about 4months (she is now 2yrs) and is fairly intense and constant. I'm sure that in a few months time you will look back and wonder what all the fuss was about as you adapt as needed.

Re routines I don't see why the deafness should make the routine any different, I suspect you may need to adapt in terms of providing more visual aids. I found Gina Ford's suggested routine very helpful as a guide for a new, novice, parent, and have used it for no.1 and no.2 (now 7 months) though I do not follow it as strictly as Gina implies. BUt it certainly has been a useful guide and means that parents get some time to themselves too (always a bonus!!). Also, I found it v helpful re getting the feeds spaced out to 4 hrs, eg, by offering both breasts after a pause (both my girls had their issues re feeding, one very sucky and the other just too nosy!)

Re the moses basket and sleep issue, perhaps you could try a comforter for your little one, eg, a cuddly toy or snuggle that you sleep with for a night or to so that it gets your smell and then pass on to your little boy. Also, I wondered whether a photo of you nearby might be helpful. I am sure you can get soft cubes that photos can be inserted into. All babies seem to love looking at faces and this might provide some additional reassurance??? I htink all babies prefer sleeping w mum and dad and it just takes them a little time to get used to being on their own.

Anyway, just a couple of suggestions. Hang on in there, it does get easier as your confidence grows and routines can be very useful at times. My mother-in-law was alwasy telling me - "it's just a phase, in a few months she'll be out of this one - and into the next one!" and I think it is true of us too.

S x

hi ali, congratulations on your beautiful little baby boy, im sorry to hear about his deafness im sure it souldnt stop you from getting a routine as normal. like saf and wenders has said when you start to get use to your new baby and his needs and wants youll soon start to settle into your own routines .everyone is nerves at first esp. with the first child. with the sleeping issue they soon learn to cry for something they want again and again and if he keeps sleeping with you he'll expect it all the time and cry for it too, some mums and dads dont mind and are willing to share but if you bare in mind with most pople it normally lasts for a few years, its up to you! it sounds like he knows this already by what you have said. have you tried to put the moses basket right up to your bed so he can see you and sence you are there etc also you could try a mirror next to him so he doesnt feel alone. have you tried a breast pump then he gets your goodness but in a bottle then it gives you a bit of freedom this might help a little with the sleep too. just keep going it really does get easier. anytime you need to chat we are all here. good luck and take care becky xxx

hi congrats on your baby. First of all dnt feel guilty its not your fault and will take some getting used to. Have u thought of transfering him to a crib or cot as i found my little girl was anxious of the space in a moses basket the first time i put her in a crib she slept right thru. your little boy is extra special and ihope he knows what lovely parents he has. are there any support groups in your area they may help too get to know people in your are in the same situation as you. Hope this helps take care and good luck

i know im a bit late responding to this msg.... but.... back in 1994 my little girl was born, by the time she was 9weeks old she had hearing aids.... she was profoundly deaf 50db in the left ear, 60dp in the right ear, i was only 18yrs old at the time and was completely devastated, i had to start going to a nursery where other deaf children went... newborn to 4yrs, so that i could learn sign-language and my baby didnt feel like an outcast in the world.... anyway at 8mths old i thought beth (my daughter) was responding... i phone my key worker at the nursery and asked her to come and check for me, she told me that deaf children pickup vibrations much more easily, i wouldnt except this, she came out anyway and ran a few tests (just to keep me happy i think lol) anyway sure enough beth turned to the sound... we had to go back to neurology to have the electrodes attached to beths head again while she was asleep... then i had to wait for the results... a couple of days later i got my appointment at ENT, as i walked through the door of the doctors office he said 'miracles do happen', beths hearing test had come back NORMAL... apparently 1 in every million go through this, and nobody knows why.... im not saying this to get anyones hopes up but you never know, miracles really do happen and im a witness to it.
Beth still has a few problems with her ears... like she gets really bad earache, and cant stand loud music etc but atleast she can hear. I really do understand AliB what you went and are going through, all thoughs things that we as hearing parents take for granted.... the birds singing, hearing your baby say mam mam for the first time, when i read your story it made me cry because ive been there... if there is anything that i can help you with please ask
take care x

I also found out that my baby boy ( Liam ) is deaf in both ears I know how you feel he is 6 weeks olds and due to have molds for his hearing aids this week, like yourself we also have no history of deafness in either of our families!! I am trying to be strong but when I really think about it I also shed a few tears, thinking about his future!! Liam is my 2nd baby my 1st boy is fine, I almost wish I did not take him saying mumma and dadda for granted.
Liam was 8 weeks premtrureand was put on antibitics which can cause deafness in 1 in every 1000 babies, but I do not think I will ever be able to prove that this was the cause,
When talking to liam I some times stop beacuse he can not hear, but them I just have to treat him normally, he loves cuddles but not sure about being walked round when you holding him!!
He sleeeps really well but I guess He can not hear anything until he gets his hearing aids.
How long did you have to wait until your son got his hearing aids???
It would be great if you could try and get e mail me back, we are in the same boat and face the same problems ahead!!
talk soon Jennie

Hi allow me to introduce myself, my name is Tara and I'm PROUD to be deaf. Both my husband and I are deaf, we have 3 children 2 girls who are hearing and a son who has a hearing problem. This kinda upsets me that you guys think that being deaf is a sad thing or an bad condition. Let me tell you guys this, it ain't a bad thing! I mean look at it this way your child can now communicate with both hearing and deaf. There are programs to help the deaf people adapt to the hearing world such as speech therapy ( I can talk like a hearing person because my parents forced me to take speech during school years), hearing aides, interpreters, etc. There's even schools for the deaf...I graduated with high honors at a HEARING public school! There is NOTHING wrong with being deaf! Now you as a parent have a choice, whether you wanna make the effort to learn sign language and embrace your child's deafness or brush it off like it's a terminal illness...trust me, your child will remember this as he/she grows up.

Hi Tara I think you are incredibly unfair to come on here and judge how people feel when finding out comething is wrong with your child!!

I'm very sorry that others feeling upsets you but who the hell are you to judge! every situation is different i dont want to sound rude but being deaf yourself you expected that you children wuld have similar problems for us the diagnosis was a huge shock which is why you feel a sense of devestation!

Your comment about making the effort with sign language is a joke as well, I have chosen NOT to introduce sign language yet with my son as he was implanted with cochlears so young and wanted him to hconcentrate on listening and speaking first! your comment makes out that we cant be bothered and lazy.

I cant stand people like you and yes im coming across as rude and willnever dream of that up until now but everyone comes on here for support not to be made to feel like crap for having natural feelings!!!!

My son is hard work and is completeley different to his siblings but doesnt mean he is loved any less and in fact has more attention than the others do!

hi ive just found out yesterday morning that my baby boy of 3months is deaf in one ear and only has slight hearing in the other and i am truly heartbroken i have basically held him since then i feel very guilty, he also sleeps in my bed (i breastfeed too) he sleeps so well with me i just dont bother putting him in his bed anymore i find that where ever i lay him he wakes daytime or night time so in the night i pretty much hold him through. ive also got a 2 year old with perfect hearing who sleeps right next to me in his bed! you need to just figure out whats best for you im happy with my son to be with me in my bed although the health visitors spit fire at me i honestly feel like he is only safe with me and mothers know there own children. my health visitor did suggest to me to place my pillow i slept with in his moses basket but make sure he cant fall down sides etc he will smell you and i wrapped him up real snug so he felt secure with a blanket and thats what ive been doing in the daytime it seems to work i also pop a dumbie in his mouth for extra comfort. i hope i have helped you slightly

hello i no u posted this a few years ago but i am 17 and have recently found out that my son has severe to profound hearing loss the condition is called auditory neuropathy, i to am having trouble putting oliver in his cot at night he sleeps in my bed he is now 17 weeks as your child is now a bit older do u have any tips on how to make him sleep in his cot xx
many thanks
katie x

Hi there,
I also have a baby (hes one of a twin) who was diagnosed with auditory neuropathy at nine weeks old, i think i already knew that there was a problem with his hearing but it was still a terrible shock and i know exactly how you are feeling!!!

He has always been much harder to settle than his twin brother in the end i spoke to the audiologist, she recommended that i keep a little night light on (he seemed to panic when he woke and it was dark) i also brought a fisher price music show which had lots of lights on this seemed to help him and gave him something to focus on, i also always put him in his cot awake and just sat next to the cot until he was settled and although it took a little while he now goes in his cot awake and can settle himself, he does have a really soft comforter as well and i always make sure that it is right next to his face so that he can feel it!!

On a really positive note Max is now eleven months old and his hearing has improved amazingly, he turns to loud noises is making babbling noises says mama dada etc, he was fitted with a baha (hearing aid)at 5 months old and this did seem to help although he no longer wears it or keeps it on!!!!!
He still sees the audiologist every 12 weeks and the last time we went she couldn't believe how much progress he had made we will see her again at the end of this month and the ent clinic as he also has congestion so they may fit gromits at around 18 months old and this should also help.

Anyway i hope i have been some help and i hope you get a good nights sleep soon!!
good luck
Lennie

Hi everyone. I don't have any advice to offer but just wanted to let those who've recently posted know my little boy Owen, 14 weeks, is profoundly deaf in both ears (sensorineural hearing loss, ie permanent). So if you ever want to chat, maybe we're going through some of the same things? He has hearing aids but they give a lot of feedback noise and he gets agitated when they're on. We will be discussing cochlear implants but he also has a severe heart condition (he has Noonan syndrome and both his heart and hearing are related to this), so he might not be able to have the general anaesthetic.
xx

Hi, I just found out that my grand daughter who lives with me is severly deaf in both ears. We have not seen an ENT yet, will next month. Baby is 5 weeks old. She is very difficult to lay to sleep, she likes to be held all the time unless she is able to be kept occupied with a toy she can see. I want to do as much as I can as early as possible for my grandchild to help her develop at a normal pace. I live in NY and wanted to know if anyone had any advice in terms of what can we do to help our baby. Sure the ENT will probably send her for HA's but in terms of her daily life with us, what advise do you have to help her develop her other senses as we are new to this situation. All advise is appreciated.

Hi there! I just read your post which I ow was quite some time ago but I was wondering if you remember the name of the antibiotic your baby was on after birth? My son was born premature and was also on antibiotics but no one ever told me that this may have been the link to his profound deafness. Just curious to get more information. Appreciate your time and hope all is going well with your little one!

Hi, we just found out our little boy is profoundly deaf when he turned 3 months old...he is now 6 months old and is wearing hearing aids, although we are told that it is more to help with possibly stimulating the senses than him "hearing" as the most he might be able to pick out would be clicks. It has been a very difficult and stressful 6 months as he was born premature with other health issues (cardiomyopathy and 2 brain bleeds) we also just found out that he has turned eyes and is severely far sighted so he is also now wearing glasses...I feel like I have been robbed of my baby as he looks so grown up already! We are also waiting to hear more about cochlear implants and have a meeting in October with a specialist when we will find out if our baby us a candidate. Our son also has a lot of trouble sleeping, he seems to prefer to sleep with myself and my husband, especially if he wakes up in the middle of the night. The other thing we have noticed is that he seems to cry ALOT...for hours sometimes without barely taking a break...very exhausting but I wonder whether there is something else going on with him or if other deaf babies cry this much too. I think this is a great resource to meet other moms in the same position...thanks to everyone for opening up!

You truly have my sympathy, I am also a first time mom, and can't imagine the difficulties you have been facing. Have you looked into any hearing impaired support groups in your area?

MADSBELLSNGEORGE UR JUST TOTALLY WRONG! READING UR POST MADE ME LAUGH! I AGREE WITH TARA 100%

FOR ANY PARENTS THAT HAVE A CHILD WHO IS DEAF OR HARD OF HEARING WITH NO BACKGROUND OF DEAF FAMILY MEMBERS SHOULD LEARN THE DEAF CULTURE BC NO MATTER WHAT THAT BABY IS UR BLOOD THE ONLY THAT IS DIFFERENT FROM U GUYS IS HE/SHE IS DEAF OR HH. I HAVE FRIENDS WHO BABYS ARE DEAF AND THEY DONT TEACH THIER CHILD SIGN LANGUAGE THEY ARE STUPID! HOW ARE THEY GOING TO COMMUNICATE?????? HARD OF HEARING OK THEY CAN TALK BUT STILL I THINK THEY SHOULD LEARN SIGN LANGUAGE BC ITS A BEAUTIFUL LANGAUGE. HAVE U GUYS HEARD OF THE SHOW "SWITCHED AT BIRTH" U SHOULD LEARN SOMETHING FROM THAT.

I AM HEARING. MY FAMILY, MY MOM SHE IS HARD OF HEARING, MY DAD HE IS FULLY DEAF, MY 21 YR OLD SISTER SHES FULLY DEAF, MY 16 YR OLD SISTER SHES HARD OF HEARING AND I HAVE A BABY SISTER WHO IS 4 AND SHES HEARING. I AM PROUD OF MY DEAF/HH FAMILY!!!! WE CAN DO JUST ABT ANYTHING JUST LIKE THE HEARING PPL THE ONLY DIFFERENCE IS THEY CANT HEAR!!!! MY FRIENDS ARE AMAZED THAT I KNOW SIGN LANGUAGE THAT THEY WANT TO LEARN THEMSELVES. MY FRIEND WHO HAS NO FAMILY MEMBERS WHO ARE DEAF IS MAJORING IN DEAF CULTURE IN COLLEGE. MY FRIEND HAS A BABY WITH HER BOYFRIEND WHO HE DOES NOT HAVE DEAF FAMILY MEMBERS.

I AM PROUD TO BE AROUND DEAF PPL. I RATHER HANG AROUND WITH DEAF PPL THAN HEARING PPL AND IM HEARING!!! U GUYS MAKE IT SEEM THE DEAF IS A PROBLEM????????????????? LIKE I SAY AGAIN THEY ARE JUST LIKE US EXCEPT THEY CANT HEAR!!!!!!!!!!

MADSBELLSNGEORGE MY FAMILY IS HAPPY THE WAY THEY ARE THEY WOULD NEVER GET THE COCHLEAR IMPLANTS! IF UR BABY IS FULLY DEAF ALL HE IS GOING TO HEAR IS A BIT OF GARBLE MOST DEAF PPL WILL NOT GET THAT!





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Hi Tara I think you are incredibly unfair to come on here and judge how people feel when finding out comething is wrong with your child!! I'm very sorry that others feeling upsets you but who the hell are you to judge! every situation is different i dont want to sound rude but being deaf yourself you expected that you children wuld have similar problems for us the diagnosis was a huge shock which is why you feel a sense of devestation! Your comment about making the effort with sign language is a joke as well, I have chosen NOT to introduce sign language yet with my son as he was implanted with cochlears so young and wanted him to hconcentrate on listening and speaking first! your comment makes out that we cant be bothered and lazy. I cant stand people like you and yes im coming across as rude and willnever dream of that up until now but everyone comes on here for support not to be made to feel like crap for having natural feelings!!!! My son is hard work and is completeley different to his siblings but doesnt mean he is loved any less and in fact has more attention than the others do!

hi i am not a mum of a deaf baby, but i have a few friends who have deaf babys/children, they all find music next to the child, ie for the vibrations helps very well to settle a new baby to try and give some routine, also controled cry they were told to try along with they music and only play it when its bed time so they know the difference, it is a shock to find out you child has a hearing problem or to be totaly deaf, i myself at 21 have decided to got to college at a night course to learn sign language, its excelent and i advise alot of people to do the same, cause fair enough if yo uhave chosen hearing aid for you child they are not going to be able to hear everything so basic sign is always good so you can comunitcate easily with them and to not get frustated as even with a hearing toddler it is difficult but with a deaf todddler child it is alot more confusing, deaf children get more agitated, like if you ignored you child when they need a pee, they would take a hissy fit till you listened to them, its not a minus, everyone will come across difficult times with there children it just so happens that some are earlier than other, on one hand its good they found out so early some children go half way through school being treated like dirt cause the teachers and pupil just think there stupid before its reconsied there actualy deaf, this way you can prepare yourself and your child for the years to come. xxx

Finding out that your perfect baby is not "perfect" by the standard you are accustomed to is hard. There is a grieving process when any challenge is presented. It takes time to digest and come to grips with any news that is perceived as negative about your baby. However, time is exactly what cannot be wasted if your baby is identified with a hearing loss. Hearing aids, cochlear implants, or any auditory training is not a guarantee. What is guaranteed is that your child will begin to develop and language acquisition years are at stake. The only 100% effective way to ensure that your baby has communication and language equal to that of a hearing baby is to give them access to a visual language. Learning sign language will take time and is not easy to accept, but a lifetime of language delay is the worst thing that you can do for your child. Potential gains in hearing with aids/CI can always allow for your baby to rely mostly on speech and auditory communication, but if that doesnt prove successful then in the meantime you lost crucial language acquisition years that you will never get back. Deafness is not harmful, it doesn't pose life threatening challenges, and is not anything to be ashamed of. Your baby is perfect. Perfectly planned and perfectly created. Now, your job is to make him/her feel perfect. Don't be audistic, be proud. (My son is profoundly deaf, in college, and very successful. Our whole family uses ASL because we never wanted him to feel left out.)