Because Afif is Special

i've been wanting to blog about this for a while. But i couldn't find the mood to. Or i simply wasn't ready. So here goes..

The Beginning..

When Afif was 3 days young, he had a Newborn Hearing Test. This test is compulsory for babies born in Prince Court Medical Centre (PCMC). The result showed that he has mild hearing loss in both ears. The audiologist told us not to worry coz some babies have that kind of result. Especially babies like Afif who were born borderline premature, kinda low birth weight and through c-section. Maybe some fluids are still in his system, so that's why the hearing results were like that. i was so glad. So we didn't think too much about it.

About a month after that, we had the same test. Still negative. A few trips to the PCMC audiologist after that gave the same results. The audiologist said he can hear loud noises and high frequency sounds. But normal, conversational voice, dia dengar sayup-sayup, tenggelam timbul. He'll have problem to speak because he can't hear voices clearly.

i, of course was shocked, sad and worried. What confused us is that he laughs, responds and talks back when we talk to him or when he's watching tv. When we call him, he responds. What is that?

My husband and grandma was all "Don't think about it too much. He's still little. His ears are okay and he'll hear fine.." We're basically in denial.

Acceptance

One day, it was raining outside with loud thunders. A few times, i jumped out of my skin coz of the loud noise. But my baby, went on playing and slept soundly as if it was normal. Like he did not hear all the noise. Another day, he was watching the tv and i came from behind him. Calling his name aloud. A few times. No response. He just watched the tv. Like he couldn't hear me call.

These are the two turning points. The events that snap me out of denial. Though hard, i accepted that my son has a hearing problem.

We went to get him further tested. This time we went to Kuching General Hospital for second opinion. Why Kuching? Because my parents in law live there and my father in law works in that hospital. The test gave same result; my son has mild to moderate hearing loss in both ears.

The Cause

To all the doctors and audiologists we asked the same questions; why Afif has this hearing loss when we, his parents, have normal hearing? We don't even have family members with hearing loss. 

They say in 1000 births, 1-2 babies are born with hearing loss. Afif is one of those babies.

Digging back into my medical history, they all have the same answer; they expect the fever that i had when i was 2 month pregnant was the cause. If you read this post that i wrote, i had a viral fever (which i thought was dengue) when i was 2 month pregnant. My temperature was 40degree Celcius that time with rashes all over my body. That time, the doctor even said i could lose my baby. But i was thankful my baby was ok and i gave birth 7 months later. i never thought he would have this kind of problem.

A fever or illness at early stage of pregnancy puts the baby at risk because at this stage, all major organs are developing. i guess Afif's hearing organs were developing when i had that fever. Maybe the development somehow were stopped.

The audiologist said that Afif's eardrum, cochlear, middle ear most of the ear anatomy are functioning okay. The problem is the nerves did not develop normally. The nerve can not transfer sounds from the ear to the brain. i don't really understand that. Will need to ask more.

i'm just thankful it's just his hearing. At least his heart and brain are functioning okay.

Moving On..

The audiologists said we're lucky that we detected his hearing loss early. This way, he could wear the hearing aids early in life and he could hear and learn to talk like normal babies. In most cases, hearing loss is detected when the child is 3-4 years old because the parents noticed that he/she couldn't speak. By that time, it's too late and it'll take more effort to teach the child about sound and to get the child to speak properly.

We bought his hearing aids (HA) when he was about 9 months old. So far he hates it. You know how babies hate to wear hats, hairclips, glasses, etc on their body. Same goes with hearing aids. He yanks them out all the time. When he wears them, we have to keep his hands busy or get him distracted so that he forgets about the hearing aids. 

So far, we're doing a bad job. He wears the HA mostly at home on weekends for 2-5 hours. On weekdays, he only puts it on for maximum of 1.5 hours coz he spends the day at the babysitter's. Itu pon kadang-kadang je bukan hari-hari sebab kadang malam dia ngantok la ape la.. At first we're not advised to let him wear the HA at the babysitter's coz of loud noise (banyak budak kat situ). In the last 6 weeks we have let him wear the HA at the babysitter's. They said he still yanks the HA out all the time. Sigh.

We have been seeing the audiologist at Pusat Audiology HUKM for follow up. The problem now is Afif hates the HA. We (husband, the audiologists and i) don't know if he hates it because it's not comfortable or is it because the tune and sound of the HA is too loud for him. Dah dua session kitorang buat test just to get the most accurate result tapi tak dapat, sebab Afif takleh duk diam. Ye lah budak tengah lasak, tatih la main la cranky lah dia.

i expect him to have delay in speech. Lambat la kot baru bercakap. Sekarang ajar dia sebut basic things like ball, mama, nak, daddy.. Dia dengar je tapi tak sebut pon.

i hate myself for not trying hard enough to help Afif. He really has to wear the HA full time when he's awake but so far when he's with me, he only wears it 3 hours maximum because he hates it. Kat rumah babysitter lagi lah kejap dia pakai agaknya. i really hate myself for not doing good enough.

That's Afif's story. Maybe there'll be a different blog on his hearing journey to share our experience and to help parents out there who has similar experience. i'm telling you, people in Malaysia are not exposed to this. It's hard for us to find a support group or people with similar experience so we feel so alone.

Please pray that my son will live a normal life. My biggest fear is for him to be treated differently by people, for him bullied at school/work or for him to grow up with low self esteem. If i could, i'd gladly donate my ears to him so that he could be normal. But there's no such thing. Sigh.

i still am in a bit of a haze with all this hearing issues. Some days i refuse to acknowledge it. Some days i cry. It is not easy.

Playtime! 

 Penat la, mama..

Out and about.

Whatever it is, we'll keep on fighting with him. For him.