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En-Rei had her cochlear implant operation performed on 21
July 2003 at SGH when she was two and a half years old. She has a severe to
profound hearing loss and was a relatively good hearing aid user, and
therefore considered to be a borderline candidate for the implant. We
eventually decided to go ahead with the procedure with the hope of
improving her speech quality and communication ability, and also to give
her greater ease of hearing in her everyday life. The following describes
our experience before, during and after the operation.
The Prep
After having agonised many months over whether to give En-Rei the cochlear implant and consulting various
professionals (including those from the SGH Listen & Talk program, the Canossian School, the Shepherd Centre in Sydney and
Judy Simser, who sat in on one of En-Rei's therapy sessions via web-cam), we finally made
the decision to proceed with the operation in early 2003. Having made the
difficult decision, we then turned our attention to preparing En-Rei for the hospital operation experience.
The first thing
we did was to order some stuffed toys from Cochlear – they have a koala
bear and a teddy bear, both fitted with toy implants that fit on the head
with velcro and speech processors worn in pockets
sewn on their t-shirts. We played with En-Rei
with these toys, introducing her gently to the device in a fun way,
teaching her the vocabulary and letting her try the toy implant on over her
own head. We explained to her that she would also get her own cochlear
implant, just like the teddies.
Next, we scoured
the bookshops for books relating to the hospital experience. En-Rei has loved books right from when she was just a
small baby, and we found that reading to her was one of the best ways to
educate her about the experience. We used two extremely good books on the
subject – "Going to the Hospital" published by Usborne and "Katie Goes to the Hospital"
published by Brimax. Both books describe the
hospital experience in an amusing and friendly way, from packing your bag
to wearing the ID bracelet, having your temperature, pulse and blood
pressure taken and ears checked, having the gas mask administered, going in
for the operation and waking up after. They were an invaluable aid.
Coincidentally, both books involve young children having an operation done
on their ear!
In addition to
reading, we also acted out the scenes from these books as much as we could
in role-play, using toys and props. We bought a toy doctor set so that En-Rei could handle the stethoscope, auroscope,
thermometer, syringe etc. by herself (incidentally great for teaching vocab), and from the pharmacy we bought several
bandages to wrap round her head as part of the play (the child has to have
a big bandage wrapped tightly round her head for a day after the actual
operation so its important to help her prepare for it so that she won't be
scared). It got to a stage that when En-Rei saw
the bandage, she would actually ask for it to be wrapped round her head! We
also borrowed the surgical gown that she would wear for the operation and
let her play around at home with it (we called it her "special
gown" and made like it was a special treat for her to wear it).
We also had in
mind to take her on visits to the hospital ward, to familiarise
her with the nurses and the rooms, and also to make an experience book out
of it, but we were thwarted by the SARS outbreak which made visiting
hospitals at that time a no-no! If not for SARS, I am sure the activity
would have helped in En-Rei's hospital
experience.
The Op
The big day
finally arrived. Our operation was scheduled for first thing on a Monday
morning, and we had to get En-Rei admitted to
hospital on the Sunday before. Apart from the crowd (backlogged from SARS),
admission was smooth. I finally realised – the
prep beforehand really works. En-Rei understood
she was in hospital and that she would have her own special bed. She
allowed the nurses to tag her with the ID bracelet, take her temperature,
blood pressure etc. and Prof Low to look into her ears without even a
whimper. All I had to do was explain to her using the books what was being
done, and she would go along with it. It helped that we had taken some
pains to decorate her room with balloons and toys.
The anaesthetist Claire Ang also
came to brief us and explain what was going to happen. I would be allowed
to accompany her with her favorite toy to the operating theatre right up to
the point when she went to sleep. They would either use the gas mask or a
needle in her hand (in the end, we went for the gas mask because En-Rei's veins were not prominent enough). I remember
Claire telling us that the mask would smell of strawberries and the whole
night before the op, I kept telling En-Rei that
she would have to smell the mask ("Mmmmm…it
smells good!"). I was also told firmly not to pass any of my own
anxiety to my child!
I did not sleep
the night before (too anxious!), and was glad when the nurses finally came
to wake us at 6.30am. I got En-Rei into her
"special gown" and kept reminding her to smell the mask! I also
started to tell her that when she woke up from sleeping, she would have a
bandage round her head and that she was not to touch it.
At the operating
theatre, I sat in the prep room with En-Rei
waiting for them to come get us. Then Claire came and played and talked
with En-Rei all the way to the OT. Prof Low was
outside to greet us with some reassuring words. I have to admit it was
rather intimidating inside with all the equipment and strong lights around.
I sat En-Rei down and started reading her a new
book (I had requested that she keep her hearing aids on until she went to
sleep so that she would be able to hear me). Claire put on the mask and
within 30 seconds, En-Rei was asleep. She had not
made a single protest. We lay her on the operating table,
I gave her kiss and then left her.
I would say that
this was the hardest part of the entire experience for me. At that point,
you really question the wisdom of your decision to voluntarily put your
child through the operation. All I can say is that you have to focus on the
long-term, and believe that the implant is going to help your child in the
future. The anxiety of the operation is just a short-term thing. Easier
said than done!!! Having a well-prepared child really helps. If she is not
struggling and crying, things are much easier to handle.
The Relief
The entire op
took almost three hours. They allow one person to go in and be with the
child when she is just coming out of GA but when the nurse finally came to
call us in, I was so nervous that my temperature shot up and they wouldn't
let me in! So my husband went in instead. Anyway, between him and three
nurses, they could not control or comfort En-Rei
who was pretty hysterical because the bandage was covering her eyes and I
guess she was just overwhelmed. The little girl tore off her bandage and
her drip and no one could stop her! Finally, I managed to enter the
recovery room and held her and calmed her down. Prof Low had to come back
out to re-bandage her head! Thankfully, no real damage was done. To be
honest, I was somewhat thankful she was struggling with such vigor because
that meant she was recovering well!
That was the
only glitch in our entire hospital experience because after that, En-Rei behaved very well. She was groggy the whole of the
first day after the op and slept alot, but she
did not cry, fuss or try to touch her bandage even once. She did not throw
up, and did not take any painkillers after the op. In fact, by late
afternoon, she was able to down four bowls of porridge! Quite frankly, we
were amazed. She seemed to have survived the three-hour op without feeling
any pain at all!
The first thing
she did when she woke up the next morning was to point to her bandage and
say "Don't touch!" (all that drilling
beforehand must have paid off!). Prof Low came to see her early and to
remove her bandage. All was well and we were able to leave the hospital
that day. We were home by lunchtime. By evening, En-Rei
was running around and you would not have guessed that she had been through
the op. We actually had to restrain her from being too active. We had been
warned to expect some nausea, pain and maybe some balance problems after
the op but En-Rei had none of that at all.
All during the
two weeks before switch-on, En-Rei kept pointing
to her ear and saying "Operation in the ear – wait!" (as in wait for it to heal). We were advised to keep the
wound dry so En-Rei went through two weeks of not
washing her hair! We tried to keep En-Rei home as
must as we could but she was clamoring to go out all the time. Funny thing
is, she actually once asked to go back to the
hospital! I guess anything to get out of the house!!
The Result
We were
anxiously waiting for switch-on which was scheduled for 4 August 2003.
Again, we had tried our best to prep her for the event by talking about the
implant and how she would soon have one of her own (fall-back to the
teddies from Cochlear!). She was already wearing the actual speech
processor on her back and the ear piece and magnet on her head for a few
days before switch-on, just so she could get used to the equipment
beforehand.
Switch-on was
smooth, although En-Rei did not show much
reaction to the new sound probably because she had already been hearing
with her hearing aids before. We managed to open up 18 channels and get a
pretty good map using neural response testing from that first session.
We are now almost a week after switch-on and eagerly
monitoring her response to the CI. Here is what we have to report so far:
· On Day 1 of switch-on, I knocked on the door outside of
the room she was in and En-Rei asked "Who's
that knocking at the door?".
· Also on Day 1, her Daddy was having a shower in the
bathroom and En-Rei was outside playing with me.
After the shower was turned on, En-Rei turned to
me and said "Papa having a shower".
· On Day 3, we took her back to see Prof Low just to make
sure the wound was healing OK and when he took the magnet off to examine
her, she said to him "No more take off the cochlear implant – put it
back!". She'd become rather attached to it!
· By Day 6, En-Rei was able
repeat the Ling 6 sounds and also to understand and repeat some basic words
just listening with the CI alone.
We continue to
be astounded by the progress En-Rei shows each
day, and marvel at how her responsiveness to sound has improved. Needless
to say, we are glad we stuck by the decision to give her the implant. I
guess this is the part you have to focus on when you are going through the
motions building up to the op!
Our sincere
thanks and appreciation to the entire team at SGH Listen and Talk – Prof
Low for having done an excellent job with the op and for always being
sensitive and responsive to our needs, Steven for being so accommodating
and patient with our questions, Olivia for her unfailing support and advice
(and always being there to listen to me!), and Mandy, Steph
and Vasu for their genuine concern and
friendship.
Lune Teng
August 2003
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