Audiograms: August 2014

Last two weeks we went for unaided audiogram at Klinik Audiologi UKM. Ntah kenapa hari tu Afif takut dengan puppet berlampu tu (kene respon pandang ke puppet bila dia dengar bunyi. Itu untuk menunjukkan yang dia dengar). Dia menangis dan berpeluk je masa mula-mula start test. We ended up not using the puppet, just let him draw (more like menconteng) to distract him and observe his change of facial expression/movement bila bagi dengar sound.

What's worrying is that his hearing loss seems to be progressive at the high frequency. Meaning his hearing is worse that the last time we had an unaided test.

Afif unaided test Aug 14, 2014.

i argued with Pn. Izzati about the accuracy of the test because Afif listens well and while his speech progress is not much, it does not seem to worsen. He can even pronounce shh/ (which is a high frequency sound). Pn. Izzati kata dia ulang banyak kali bunyi kat high frequency tu tapi Afif still tak respon. Lagi la mama risau :'(

We discussed about possibility of cochlea implant for Afif. Beacuse if his hearing loss is really progressive, i want to insist on him having a CI. i don't want to risk waiting and delaying him to learn to speak. Pn. Izzati suggested to run one more aided test. With both aided and unaided test, she can bring forward Afif's name in the next CI meeting.

So last week we went for another aided audiogram.

Alhamdulillah, this time he was not scared of the puppet anymore. And the more good news is, Afif's aided hearing threshold has improved from last aided test in June.

Afif aided test Aug 19, 2014.

Though relieved at this result, i'm still in doubt. Because after 8 months of consistently wearing hearing aids, and looking at the good aided hearing threshold, Afif's meaningful words are limited to Mama, meow and hai. Nothing more. 

Yes, he had produced more sounds like shh/, na/ di/ ge/ but no other meaningful words. Maybe there are certain speech sounds that he can't hear or maybe it's our teaching technique that is wrong.

At the last discussion with ENT, audiologist and speech therapist, they all agreed that Afif is progressing okay. But as a mom, i'm still worried. i'm still not satisfied.

As of today, we have decided to seek second opinion from experts from other hospitals. We feel that after hearing opinions from others, we'll be more comfortable in making decision; to continue with HA or to go for CI. At the same time, we're learning more and more to be a better speech therapist for him.

Being parents of deaf child really is exhausting. It's not the dealing with your deaf child that is exhausting; it's the pressure of making the right choice for him that is exhausting. We want the best for him but we don't know what the best is.

O' Allah. Ease our journey to make the right choice. Ease Afif's path so that he can hear and speak beautifully. Please give him the ability to hear and speak and the opportunity to learn, be accepted and have a bright future like other normal children. Amin.

MRI & CT Scan

Last 2 weeks Afif did MRI and CT scan. Purpose of this scan is to investigate Afif's ear structure and function, in case he needs cochlea implant.

We did the scan at UKM Specialist Center under Prof. Goh. i thought doing MRI and CT scan is simple; walk in to the hospital, sedate Afif and get him to sleep, do the scan and leave. Boy, was i wrong.

Because Afif is such an active little boy, Prof Goh said sedating him wouldn't be enough as he would probably wake up halfway through the procedure which is a complete NO as we need to be perfectly still during these scans. So Afif had to be under general anesthetic. In other word, complete knocked out under anesthetic. So we checked in at the hospital the day before the scan.

What's more challenging is that my husband is away and it was the first day of Ramadhan. Imagine dealing with an excited-to-be-in-a-new-place toddler alone and fasting at the same time. He didn't want to stay in our room. He walks all over the ward, demanding for elevator rides (we went up and down the lift a dozen times).. i can't even buy food for break fast. Thank God for the kind nurse who bought food for me.

 Kepenatan lepas nangis sebab tangan kene cucuk

 i'm bored, Mama..

Strike a pose

Afif's scan is scheduled at 9am next morning. He had to fast for 6 hours prior to that. That. Is. The. Hardest. Part. He is still breastfed and still wakes up 3-4 times a night. That morning, he's awoke at 5am (thanks to the nurse who insisted on taking his blood pressure.. Last-last tak valid pon bacaan) and refused to go back to sleep without being breastfed. He cried and cried. i tried distracting him but distraction didn't last long. He's too thirsty that he even tried to drink from mineral water bottle. Watching your child cries in hunger is the worst.

Before going to the Radiology Department. 

Dia macam tau-tau je orang nak buat something kat dia. 

Crying coz he wants milk.

The Procedure

After hours of denying my poor boy any food and drink, it's 9am. The procedure started at 9.30am. They put him to sleep ( a bit heartbreaking as he was crying and refusing to lay on the MRI bed. i had to hold him still while the medical people drugged him and watched as he slowly drift into sleep). All sorts of wires are attached to his body. Nak MRI je pon tapi macam kene major surgery je rupanya..

 Looking like Casper the Friendly Ghost

i managed to take this pic of him in the CT scan room

i was not allowed to be in the MRI and CT scan room so i waited outside. Thankfully, my sister in law came at around 11am. At around 11.30am, everything's done. We waited a few minutes for him to wake up. The doctor and medical team waited for him to wake up to make sure that he's okay. Then, we went back to our room and later that afternoon, discharged and went home.

Anxiously waiting for him.

The Results

After 2 weeks, we went to see Prof. Goh to know the findings of the scans. Using the scan images, she explains a bit about Afif's ears. Thankfully, both of Afif's cochlea (which is the main objective here) looks good and in normal shape. It means if he needs cochlea implant, it can be done without any complications. i asked about the cochlea hair cells that are not developed (which caused deafness) but that can't be seen from MRI. To see that you need micro-something and usually done for study purposes.

Prof Goh looks happy with the scan results. For now, Afif does not need implant as his progress using hearing aids are good. If in 6 months he does not show any improvement, only then we'll look into cochlea implant. 

Audiogram: April-June '14

Last April, we (meaning the audiologists, Afif and i) managed to finally complete the audio tests covering almost all the frequencies in the audiogram. i must say it is not easy with a curious and active toddler. He hates wearing the headphone. In the end, they plug the machine in Afif's earmold instead as it it more comfortable for him.We went for 3 sessions to complete it. His unaided audiogram:

Afif's unaided audiogram.

Red line = right ear

Blue line = left ear

From this audiogram,  he has moderate to severe hearing loss on right ear and severe to profound deafness on the left ear.

From this audiogram, it's clear that he can't hear speech sounds (located in the white lines, or as we call it banana area). 

After obtaining the complete audiogram, the audiologists had done some re-setting to Afif's HAs. They add some gain in the low frequency sounds and minimize the gain in the high frequency sounds according to the newly acquired audiogram. Then, audio test with the newly set HAs was conducted. We could only obtain the right ear audiogram due to Afif's impatience (-____-)

Afif's aided audiogram (April 2014)

The results are not that good. The audiologist assured us that it's because Afif has not yet adapted to the new setting. In one or two months he will respond better to the sound.

True enough, we notice that Afif hears better after that. He now picks up low freq sounds (like daddy's and uncle's voices) better than before. Yippieee!

In late June, we went for another aided audio test to see his progress after the newly-set HAs. Alhamdulillah, as expected, there are improvements.

Afif's aided audiogram, June 2014.

Although the audiogram shows some improvement, the audiologist and speech therapist are concerned over his bad response in the lower frequency. Yes, they fall in the banana area but he's still missing sounds like 'u', 'ng', etc. At the last appointment, i can see that they're more suggestive of cochlear implant.

We're giving it a few more weeks, to see if he adapts better. Another audio test will take place next week.

In the meantime, the ENT specialist suggested Afif to get MRI and CT scan, which were conducted last week. We'll know the result next week. Hopefully we'll know if he's a candidate for cochlear implant or not.

Hearing Tests for Babies

i'm gonna explain a bit about the audio tests that Afif had taken from birth until now. Please note that this post is from my understanding, my experience and my point of view. i'm no doctor nor audiologist so i could be wrong.

1)Automated Otoacoustic Emission (AOAE)

Also known as newborn hearing test, it was conducted on Afif when he was about 3 days old. He failed it but the audiologist assured us it could mean nothing as c-sect babies tend to fail this test as fluid tend to retain in the baby's ears and nose. Afif took the test again at 1month old and still failed the test. 

How is it done?

"They place a small soft tipped earpiece in the outer part of your baby's ear which sends clicking sounds down the ear. When an ear receives sound, the inner part, known as the cochlea, usually produces an echo. The screening equipment can pick up a response." -source

2) Tympanometry

After failing his first AOAE, the audiologist conducted tympanometry on Afif. 

"Tympanometry is an examination used to test the condition of themiddle ear^[1] and mobility of the eardrum (tympanic membrane) and the conduction bones by creating variations of air pressure in the ear canal." -source 

In short, the audiologist wanted to check if Afif's unfavorable AOAE result is caused by fluid in his middle ear (which means a temporary hearing loss) or not. Afif's tympanometry suggests normal middle ear function - no fluid and the eardrums are functioning okay.

How is it done:

By inserting a thin, long probe into the ears. It took around 5 minutes. 

3)Auditory Brainstem Response (ABR) and Auditory Steady State Response (ASSR)

When it is certain that he doesn't have middle ear problem, ABR and ASSR were conducted. Afif took these tests at the age of 2 month. 

For Afif, these tests confirm that he has bilateral hearing loss (HL) especially in the higher frequency. Moderate to severe reverse slope HL in the left ear and severe to profound reverse slope HL in the right ear.

How is it done?

It is done by placing a soft headphone on baby's ears, and 3 electrodes on his forehead and sides of the head. The headphone produces sound (picked up by the ears, send to the brain) and the electrodes will pick up how the brain processes the sound. A graph (called audiogram) will then chart his brain response at a particular frequency and volume. For details on the similarity and difference between ABR and ASSR, click here

To conduct these tests, the baby has to be very still, quiet or better yet, asleep. It was a challenge with Afif as he is quite a talker (he started to coo A LOT at 2 months.. which is why i found it hard to believe that he's deaf). For the first ABR and ASSR (he was 2 month old) we did the test while i was breastfeeding him as that was the most comfortable position for him. At 7 months, we looked for second opinion at a different hospital. He had to be sedated for the test to be conducted.

ABR test when Afif was 2 months young. 

So tiny in my arms.

Afif's various test report on at 2 month young.

4) Audio Test Using Audiometer

Once his hearing loss has been determined, Afif went for countless sessions of audio tests. Without hearing aids, to test his actual hearing threshold and also with hearing aids to see how effective the hearing aids are.

How is it done?

Purpose of this test is to see his hearing behavior - can he hear and respond to it?

The audiologists uses audiometer to produce sounds at different volume (decibel) and frequency (Hz). This time, the tests are conducted while he's wide awake and alert. Unlike ABR which charts brain response, Afif's physical reaction to those sounds are recorded. Did he turn to the source of sound or did he not hear the sound? His reaction is then charted into the audiogram. 

For me, these sessions are the most exhausting. To make it work, the child has to sit still and be distracted with toys/books but at the same time not too distracted that he ignore the sounds. Afif was a 14 months old toddler who is so eager to explore everything. Who won't sit still. Who has a short attention span to toys/books. Not to mention the times he's cranky/unwell. It took us around 5 sessions to complete the tests, covering all frequencies and decibels for both ears. Phew.

*  *  *  *  *  *

Writing this post took me down the memory lane.
How with every tests, confirming that our son is deaf, are like stabs in our hearts.
How speechless we were when the audiologists and doctors explain that he can't hear well.
How my heart cried, not knowing more, not knowing what to do.
How in every audio tests i silently shouted in my head at Afif "You can hear that. Turn your head to the speaker." hoping that against all odds, he is actually hearing.

i'm sure he'll have to go through more tests. we'll take it one step at a time.

Introduction

Assalammua'laikum and Hello!

This blog is dedicated to our firstborn son, Afif Haiqal.

Afif was born on a bright Wednesday morning (on 11th October 2012 to be exact) via Ceasarean section after a dramatic false alarm. He entered this world screaming and ready to pounce.

On his third day on Earth, he failed his newborn hearing test. We were told not to worry as it is normal for C-sect babies to fail his/her newborn hearing test as the amniotic fluid tend to still be in his/her ears and nose long after birth. The ears will be ok after a few months, they said. So we did not think much about it.

At around one month old, he failed the test again.

And again.

And again..

We came back for a few more test. ABR, sedated ABR, tympanometry..

All tests and check-ups bore the same result; our son has moderate to severe hearing loss.

As parents with normal hearing with no family history of anyone being born deaf, we were taken aback.
Puzzled.
Confused.
Sad.
Mad.

Why is this happening to our perfect baby?

Why our baby?

We were in denial.

He babbles and coo a lot. He talked back when we talk to him. He CAN NOT be deaf.

We went months trying to prove the test results wrong.

We went to seek second opinion at another hospital.

Still the same result. Afif has moderate-severe hearing loss.

And we can't prove the test results wrong either.

He would not respond to me calling him from behind. He would not flinch at the sound of thunder.

Though hard, we finally accepted that our son is hearing impaired.

Not deaf, just hard of hearing.

At 9 months, he got his hearing aids.

And thankfully (Alhamdulillah) he began to show hearing behavior.

That's why this blog exist.

This blog is dedicated to Afif Haiqal. So that one day he'll be able to re-live the journey, know the effort, the path we chose, the things that we do for him, with him.

So that he knows, he is perfect in his imperfection.

i also hope this blog will be a companion for parents of deaf or hard of hearing children. All the wikis and medical websites can give you information, but i find that reading other parents' experience more of a help. i hope this blog is good enough to be a reference for you.

Please know that you're not alone.

Our children will be okay.