Some Ethical Dimensions of Cochlear Implantation for Deaf Children and Their Families

[rockdrummer]

Based on my personal experience, the correct approach to disseminate information on communications options to families who have newborns who have been diagnosed with hearing loss through newborn hearing screening programs is not through the medical community, but through Early Intervention, which is where all families with children who fail these tests get referred to.
These are the people who hand out the stacks of literature to the families, help them get referred for additional audiology/medical follow-up, etc.

Sheri

Sorry but I don't recall getting referred to any early intervention programs. You have to understand that newborn hearing screening is not the only way deafness is detected. So while you might be correct in your statement per se, it's not applicable in all cases.

 

[jillio]

Sorry but I don't recall getting referred to any early intervention programs. You have to understand that newborn hearing screening is not the only way deafness is detected. So while you might be correct in your statement per se, it's not applicable in all cases.

This is true. Referral is often dependent upon whether or not your audi is connected to a major university or learning hospital.

 

[LTHFAdvocate]

This has actually changed quite a bit, and continues to change rapidly. The state and federal government agencies who fund a significant chunk of newborn hearing screening tests are being much more insistent that a case is not considered successfully handled unless the child receives an early intervention assessment and audiological follow-up happens by age 3 months with intervention (if determined to be necessary) by six months. It isn't perfect yet, but it is getting better.

For the record, 16 years ago I was told my child had a "blue card" in her chart (meaning failed NBHS) and I should probably get her hearing checked. No material, no referral for an ABR, no communications choices, nada. She was born in Canada, and was tested in the nursery before NBHS was mandatory because she was considered high risk for hearing loss because her outer ears were different sizes.

With 46 out of 50 states with NBHS legislation in place, this really is where you are going to get information to the majority of families with newly diagnosed children with hearing impairments today. The kids who are going to get missed are:

1) False negatives
2) Home and birthing center births
3) People who opt out of testing or leave before testing can be done
4) Children with progressive losses who pass as newborns and acquire hearing impairments over time. EVAS, CMV, Meningitis are the most likely causes of this happening, so it does happen, but it is a minority of cases.

BTW, a list of every EHDI coordinator in the US can be found at

State Contacts for Newborn Hearing Programs

Even if you only get information to 75 % of the families through newborn hearing screening, it is a lot better than nothing.

Sheri

Sorry but I don't recall getting referred to any early intervention programs. You have to understand that newborn hearing screening is not the only way deafness is detected. So while you might be correct in your statement per se, it's not applicable in all cases.

 

[Angel]

And, when parents of newly diagnosed children are not provided with all tof the information enabling them to make a truly informed choice, it is an even sadder statement of the nature of the social situation.

I agreed!!!

 

[jillio]

This has actually changed quite a bit, and continues to change rapidly. The state and federal government agencies who fund a significant chunk of newborn hearing screening tests are being much more insistent that a case is not considered successfully handled unless the child receives an early intervention assessment and audiological follow-up happens by age 3 months with intervention (if determined to be necessary) by six months. It isn't perfect yet, but it is getting better.

For the record, 16 years ago I was told my child had a "blue card" in her chart (meaning failed NBHS) and I should probably get her hearing checked. No material, no referral for an ABR, no communications choices, nada. She was born in Canada, and was tested in the nursery before NBHS was mandatory because she was considered high risk for hearing loss because her outer ears were different sizes.

With 46 out of 50 states with NBHS legislation in place, this really is where you are going to get information to the majority of families with newly diagnosed children with hearing impairments today. The kids who are going to get missed are:

1) False negatives
2) Home and birthing center births
3) People who opt out of testing or leave before testing can be done
4) Children with progressive losses who pass as newborns and acquire hearing impairments over time. EVAS, CMV, Meningitis are the most likely causes of this happening, so it does happen, but it is a minority of cases.

BTW, a list of every EHDI coordinator in the US can be found at

State Contacts for Newborn Hearing Programs

Even if you only get information to 75 % of the families through newborn hearing screening, it is a lot better than nothing.

Sheri

LOL! Sixteen years ago, your daughter got a blue card, and 21 years ago, my son got a red flag!

 

[shel90]

This has actually changed quite a bit, and continues to change rapidly. The state and federal government agencies who fund a significant chunk of newborn hearing screening tests are being much more insistent that a case is not considered successfully handled unless the child receives an early intervention assessment and audiological follow-up happens by age 3 months with intervention (if determined to be necessary) by six months. It isn't perfect yet, but it is getting better.

For the record, 16 years ago I was told my child had a "blue card" in her chart (meaning failed NBHS) and I should probably get her hearing checked. No material, no referral for an ABR, no communications choices, nada. She was born in Canada, and was tested in the nursery before NBHS was mandatory because she was considered high risk for hearing loss because her outer ears were different sizes.

With 46 out of 50 states with NBHS legislation in place, this really is where you are going to get information to the majority of families with newly diagnosed children with hearing impairments today. The kids who are going to get missed are:

1) False negatives
2) Home and birthing center births
3) People who opt out of testing or leave before testing can be done
4) Children with progressive losses who pass as newborns and acquire hearing impairments over time. EVAS, CMV, Meningitis are the most likely causes of this happening, so it does happen, but it is a minority of cases.

BTW, a list of every EHDI coordinator in the US can be found at

State Contacts for Newborn Hearing Programs

Even if you only get information to 75 % of the families through newborn hearing screening, it is a lot better than nothing.

Sheri

Yea, my mom couldnt believe the changes when two of my kids were born regarding to the hearing screening tests. She said when my brother and I were born, there were no tests and my mom found out that I was deaf when I was 7 months old which was quite early in those days. It was a fluke on how she suspected that I couldnt hear.

 

[jillio]

Yea, my mom couldnt believe the changes when two of my kids were born regarding to the hearing screening tests. She said when my brother and I were born, there were no tests and my mom found out that I was deaf when I was 7 months old which was quite early in those days. It was a fluke on how she suspected that I couldnt hear.

That was early. The average age for diagnosis then was like 2 1/2 years old!
Your mom must have really been observant.

 

[shel90]

That was early. The average age for diagnosis then was like 2 1/2 years old!
Your mom must have really been observant.

Yea and for an 18 year old too!

My aunt was 7 years old at the time and she was playing the flute loudly and my mom heard her outside. She ran inside and told her shhhh! My aunt said that she had been playing it for like 20 mins and I didnt even wake up. Mind u, that was in the same room! My mom said that immediately, a knot of fear formed at the pit of her stomach. She called my name or made loud noises..nothing..she went to get pots and pans..nothing. She said she got on her knees and started bawling and shaking and was sooo afraid to take me to the dr's. Gosh, she was sooo young and I know she did her best ..only thing she could have done differently was to learn sign language for my brother since he couldnt communicate orally. That's the past but at least my brother is now living with her and I am sure her signing skills are improving! LOL!

 

[jillio]

Yea and for an 18 year old too!

My aunt was 7 years old at the time and she was playing the flute loudly and my mom heard her outside. She ran inside and told her shhhh! My aunt said that she had been playing it for like 20 mins and I didnt even wake up. Mind u, that was in the same room! My mom said that immediately, a knot of fear formed at the pit of her stomach. She called my name or made loud noises..nothing..she went to get pots and pans..nothing. She said she got on her knees and started bawling and shaking and was sooo afraid to take me to the dr's. Gosh, she was sooo young and I know she did her best ..only thing she could have done differently was to learn sign language for my brother since he couldnt communicate orally. That's the past but at least my brother is now living with her and I am sure her signing skills are improving! LOL!

Awww.....that had to be such a confusing and scary time for her! But, better late than never on the sign!

My son was red flagged at birth for a screening...that was before they sreened all newborns but I had been exposed to a virus that my doctor knew could cause deafness. He didn't pass his screening, but they told me it would be awhile before they could test again. But I knew by the time he was 3 months old because when I would hold him, if he was facing me, he would react when I talked to him. If he was facing away from me, nothing. And even if he was facing me, if there was something going on in his visual field, that was what he paid attention to...never sound.

 

[LTHFAdvocate]

Well, it was Canada after all Who knows what colour they are using today.

Sheri

LOL! Sixteen years ago, your daughter got a blue card, and 21 years ago, my son got a red flag!

 

[jillio]

Well, it was Canada after all Who knows what colour they are using today.

Sheri

You're funny!

 

[Buffalo]

My son was red flagged at birth for a screening...that was before they screened all newborns but I had been exposed to a virus that my doctor knew could cause deafness.

It can't be Rubella virus as it is long gone now unless you didn't get immunized for it.

 

[rockdrummer]

It can't be Rubella virus as it is long gone now unless you didn't get immunized for it.

I think there are many other viruses that cause deafness other than Rubella.

 

[R2D2]

That was early. The average age for diagnosis then was like 2 1/2 years old!
Your mom must have really been observant.

Yeah - 7 months is early - I think from what Shel has said before we were both born around the same time (early 1970s). I wasn't diagnosed til 2 1/2 years and didn't get my big boxy bodyworn hearing aids until 3. Mum did suspect but she kept getting fobbed off by the doctors and friends with all their stories of late talkers. It was my childless aunty visiting from Canada who insisted there was a problem. She noticed that I was holding things to my ears such as empty chip packets and scrunching them in fascination.

 

[shel90]

Yeah - 7 months is early - I think from what Shel has said before we were both born around the same time (early 1970s). I wasn't diagnosed til 2 1/2 years and didn't get my big boxy bodyworn hearing aids until 3. Mum did suspect but she kept getting fobbed off by the doctors and friends with all their stories of late talkers. It was my childless aunty visiting from Canada who insisted there was a problem. She noticed that I was holding things to my ears such as empty chip packets and scrunching them in fascination.

Speaking of late talkers, I noticed about 6 months ago that my son hasnt spoken 1 word yet so I talked with his doctors about it. They did try to brush it off by saying that he is probably a late bloomer but I still demanded a 2nd and 3rd audiogram by different audiologists to make sure and set up speech therapy for him. I dont want to take a chance with his spoken language development even though his ASL was progressing at a normal rate. The first doctor that my mom took me immediately referred me to get an audiology test for the first time and I failed it.

 

[jillio]

It can't be Rubella virus as it is long gone now unless you didn't get immunized for it.

Very good that you picked up on that. I'm impressed! And you are correct. I wa exposed to cytolomegalovirus...CMV for short.

 

[jillio]

Yeah - 7 months is early - I think from what Shel has said before we were both born around the same time (early 1970s). I wasn't diagnosed til 2 1/2 years and didn't get my big boxy bodyworn hearing aids until 3. Mum did suspect but she kept getting fobbed off by the doctors and friends with all their stories of late talkers. It was my childless aunty visiting from Canada who insisted there was a problem. She noticed that I was holding things to my ears such as empty chip packets and scrunching them in fascination.

Doctor's have often ignored parental concerns. I find it ironic that a profession that historically has participated in the reasoning that has led to late diagnosis is now so involved in early implantation.

 

[Tousi]

I think there are many other viruses that cause deafness other than Rubella.

Yeah, like CMV and I think that stands for cytomeglo virus....something like that.

 

[Tousi]

Ooops, Jillio beat me to it and I didn't see her post but I am familiar with this virus, having come across it a couple of times in all the years I worked at the residential school. Administrators tended to make it a point not to tell employees but when it was found out, it just happened that a pregnant employee was working with a child with this condition. Needless to say, the employee was transferred to another building, away from this child. I don't think she was shedding at that time, tho so all went well in that particular case even though it left a bad taste in the mouths of quite a few employees.

 

[jillio]

Ooops, Jillio beat me to it and I didn't see her post but I am familiar with this virus, having come across it a couple of times in all the years I worked at the residential school. Administrators tended to make it a point not to tell employees but when it was found out, it just happened that a pregnant employee was working with a child with this condition. Needless to say, the employee was transferred to another building, away from this child. I don't think she was shedding at that time, tho so all went well in that particular case even though it left a bad taste in the mouths of quite a few employees.

Yes, CMV is very insidious. The majority of the adult population carries antibodies due to exposure at an earlier date. Most don't even know that they have contracted CMV because it mimic the flu or a severe cold, and it is not diagnosed as CMV. It is a relatively harmless virus unless a pregnant woman is exposed. And, as most pregnant women, if after exposure, are asymptomatic, as I was, they don't even know that they have been exposed. Therefore a lot of cases of CMV deafness are listed as "unknown etiology". The only way to confirm congential exposure is to draw a titer at birth to check the baby for antibodies.

My husband and I had a friend who was ill with CMV when I was pregnant. His doctors first thought that he was suffering from flu, but when he fail to recover from the lack of energy within a couple of weeks, they began testing him for Barr Epstein, and made a diagnosis. It was perhaps a month after that when he was properly diagnosed with CMV, and his doctor was at least concerned enough at that point to tell him he needed to let any pregnant women he had been around to know that they may have been exposed. I immedicately informed by OB-Gyn who drew a titer on me the same day, even though I had no symptoms, nor did I ever experience symptoms. It was confirmed at that time that my titer was elevated, and my fetus had been exposed in utero.