ENT...
Monday 20th March
Today was our consultation meeting with ENT.
To discuss how Daisy has developed her hearing loss, what stages are we going to be taking, and any questions we may have.
There was the consultant, a community paediatrician, Ivan and 2 nurses.
We pretty much know what has caused her hearing loss and this is CMV!
CMV or cytomegalovirus is a common virus that can infect anyone; it is harmless to most people but can be very dangerous to unborn babies. Congenital CMV causes more birth defects and deaths than Down’s syndrome, Toxoplasmosis, Spina Bifida or Rubella, yet no one has really heard of it until it affects a member of your family! About 1 of every 5 children born with the virus will develop permanent problems due to the infection – nearly 1000 babies every year. These problems include hearing loss, physical and motor impairment, seizures, autism, learning difficulties and visual impairment. I wasn't aware I had this illness but I obviously contracted it during my first trimester and passed it on to Daisy. More awareness needs to be created about this disease especially to pregnant women, and pregnant women who have young children, as this disease is spread and is more common in young children. CMV is only spread via bodily fluids, such as saliva or urine etc, so by changing a nappy or sucking a toddlers dummy can spread the illness to yourself.
The consultant at Stoke hospital will be dealing with the CMV side of the hearing loss.
Where our community paediatrician will be investigating on why this has happened, she believes the hearing loss is related to the disease however, they have to make sure that this isn't a red herring and its something else.
The ENT Consultant who we will be seeing again in 6 months time, asked us if we are ready to refer Daisy to Nottingham hospital, to start the process for cochlear implants. Me and Brad decided that they should refer her ASAP, so that we can get the ball rolling and hopefully she be in for her operation before her 1st birthday!
They like to do procedure within the first 2 years old of her life, but because we have caught this early and how bad her hearing is and because the hearing aids aren't working for Daisy, this could happen quite quickly and fingers crossed she'll have the cochlear implants before the year up, so that she isn't to far behind on her talking ETC.
So we should get a letter off Nottingham to meet daisy's consultant over there, within the next 4 weeks.
The doctor explained that Daisy will be fine up until her operation, and then after the procedure, she will need a lot of help. She'll have lots of speech therapy.
There will be follow up appointments every month and lots of tests there after.
Later on that night, all I kept doing was looking down at Daisy.
I was pretty much an emotional wreck that night! Everything was going through my mind..
Everyone keeps saying I'm being really strong through this, which yes I am, but sometime I do crack!
I told Daisy that she will hear one day, and that I'm going to be holding her hand throughout everything she has to go through.
Everyone has wishes they would like, and mine is, that one day Daisy will hear her mummy and daddy's voice. That's all I hope and wish for. It horrible knowing that your baby cant hear your voice. It honestly breaks my heart!
I'm keeping very positive with everything, as I don't see the point in being negative.
All that matters at the moment, is that Daisy is a very happy baby, who loves mummy cuddles :)
Today was our consultation meeting with ENT.
To discuss how Daisy has developed her hearing loss, what stages are we going to be taking, and any questions we may have.
There was the consultant, a community paediatrician, Ivan and 2 nurses.
We pretty much know what has caused her hearing loss and this is CMV!
CMV or cytomegalovirus is a common virus that can infect anyone; it is harmless to most people but can be very dangerous to unborn babies. Congenital CMV causes more birth defects and deaths than Down’s syndrome, Toxoplasmosis, Spina Bifida or Rubella, yet no one has really heard of it until it affects a member of your family! About 1 of every 5 children born with the virus will develop permanent problems due to the infection – nearly 1000 babies every year. These problems include hearing loss, physical and motor impairment, seizures, autism, learning difficulties and visual impairment. I wasn't aware I had this illness but I obviously contracted it during my first trimester and passed it on to Daisy. More awareness needs to be created about this disease especially to pregnant women, and pregnant women who have young children, as this disease is spread and is more common in young children. CMV is only spread via bodily fluids, such as saliva or urine etc, so by changing a nappy or sucking a toddlers dummy can spread the illness to yourself.
The consultant at Stoke hospital will be dealing with the CMV side of the hearing loss.
Where our community paediatrician will be investigating on why this has happened, she believes the hearing loss is related to the disease however, they have to make sure that this isn't a red herring and its something else.
The ENT Consultant who we will be seeing again in 6 months time, asked us if we are ready to refer Daisy to Nottingham hospital, to start the process for cochlear implants. Me and Brad decided that they should refer her ASAP, so that we can get the ball rolling and hopefully she be in for her operation before her 1st birthday!
They like to do procedure within the first 2 years old of her life, but because we have caught this early and how bad her hearing is and because the hearing aids aren't working for Daisy, this could happen quite quickly and fingers crossed she'll have the cochlear implants before the year up, so that she isn't to far behind on her talking ETC.
So we should get a letter off Nottingham to meet daisy's consultant over there, within the next 4 weeks.
The doctor explained that Daisy will be fine up until her operation, and then after the procedure, she will need a lot of help. She'll have lots of speech therapy.
There will be follow up appointments every month and lots of tests there after.
Later on that night, all I kept doing was looking down at Daisy.
I was pretty much an emotional wreck that night! Everything was going through my mind..
Everyone keeps saying I'm being really strong through this, which yes I am, but sometime I do crack!
I told Daisy that she will hear one day, and that I'm going to be holding her hand throughout everything she has to go through.
Everyone has wishes they would like, and mine is, that one day Daisy will hear her mummy and daddy's voice. That's all I hope and wish for. It horrible knowing that your baby cant hear your voice. It honestly breaks my heart!
I'm keeping very positive with everything, as I don't see the point in being negative.
All that matters at the moment, is that Daisy is a very happy baby, who loves mummy cuddles :)
Comments