A Great Story Submitted By a New Member

[Guest guest]

A Road Less Travelled

" I am DEAF… but I can HEAR and TALK…so please LISTEN. "

In February of 1997, a young couple eagerly awaited the coming of

their second daughter.

At 3:30 AM the soft cry of a newborn baby filled the room. The first

question the mother asked was " who does my baby look like? " After

knowing that the baby looked like her first child, she smiled and

dozed off to sleep.

Dra. Esperanza Bolislis explained that they were being discharged

soon. The cases of bronchopneumonia in the hospital were considerably

high and their baby was at risk of acquiring such, since she had a

CONGENITAL HEART DEFECT…One may wonder why I know all the exact

details of this narration. The answer is simple: the baby referred to

is no other than my daughter le Llouise Ku Marquez.

The heart problem was something we had anticipated. I had contracted

Rubella or " German Measles " at a time when I didn't even know I was

pregnant. Knowing how dreadful this virus could be, I consulted

several OB gynes and did my own research through the Internet.

Everything boiled down to the same answer: " 80% of mothers who had

rubella on the first trimester of pregnancy may result in a

miscarriage or varied congenital defects- the HEART, EYES, and HEARING

or in some cases, the BRAIN of the baby can be affected. "

We first checked on my baby in my first trimester through an

ultrasound in Manila. It was my first encounter with her, one that

gave us an even stronger conviction to push through with my pregnancy

no matter what.

Two months after her birth, a cataract on her right eye was noticed.

It was the same time her cardiologist informed us about her heart

problem as seen through a 2D Echo. A VSD, or a hole in her heart and a

PDA where an artery, which normally closes at birth, did not close for

her. This was later confirmed through Cardiac Catheterization. My

anxiety was so high that it prompted me to have her hearing checked at

the Santo Tomas University Hospital Hearing and Dizziness Center.

le was only four months old when we did her first ABR testing.

The impression was: Clicks presented at 90 and 102dB evoked no

recognizable waveforms, abnormal ABR studies, bilateral, suggestive of

a profound hearing loss " . My child was PROFOUNDLY DEAF ON BOTH EARS!

That was the only time I cried…it was too painful to bear… it was

easier for us to accept a unilateral cataract, for at least she could

still see with her left eye…It was easier for us to accept her

congenital heart defect since it could be surgically corrected, but to

know that she couldn't hear nor speak the spoken language broke me and

my husband into pieces.

Everything was dawning on us so fast. Negative results were coming

here and there. We were faced with three problems. It was a question

of which one to settle first. Luckily, her VSD was significantly small

that no intervention was needed. However her PDA needed an immediate

ligation. That same year, 1997, le at nine months had her heart

surgery at the Santo Tomas University Hospital under the care of Dr.

Cuaso. After recuperating for three months, we did another ABR

testing, hoping that the first was erroneous. Unfortunately the second

was just a confirmation. le was then fitted with appropriate

HEARING AIDS at age ONE, which could have been done earlier upon

detection.

le was doing pretty well with her hearing aid, being able to

detect some low frequency sounds as part of her training at St.

Francis Audiological Center where we enrolled in their PARENT-INFANT

PROGRAM. There I learned how to deal with her and how to cope with my

own emotions through a series of counseling.

Despite seeing le's progress through her hearing aid in terms of

sound awareness, we couldn't help but seek for something more-a better

technology in terms of amplification perhaps. That's when I came

across COCHLEAR IMPLANT [CI], just at the time when it was being

introduced in our country. CI is a high-tech biomedical device that

brings the possibility and opportunity for some children and adults

who have profound hearing impairments to use auditory information to

develop spoken language effectively.

After attending a series of orientation and seminars, we knew that the

device was safe. Having passed all the necessary tests, we had her

implanted with a COMBI 40+ paired with a CIS-PRO processor as provided

by Medical Electronics (MED-EL). It was le's second major

operation. She was 18 months old. Her third came after 1 year and 9

months (July, 2000)- a unilateral cataract surgery on her right eye

both done at Saint Luke's Medical Center by Dr. Norberto ez and

Dr. Harvey Uy respectively.

The implant made a lot of difference, it had made my daughter more

responsive and have given her access to various sounds, ranging from

low to high frequencies, varied environmental sounds as well as to

some spoken language. It was a major transition, from tapping her to

get her attention to simply calling her name. Let me reiterate however

that the IMPLANT is not a cure to her DEAFNESS, her hearing will not

be as good as those of other normal hearing kids, but it had given her

access and more opportunity to learn to speak despite the fact that

she can only hear on her LEFT ear [bilateral implant was not yet an

option at that time]… In addition, having an implant without proper

HABILITATION is likened to a business investment with POOR returns or

none at all. With this in mind, I had to stay in Manila with le

for almost two years to learn and adapt the Auditory Verbal Therapy

[AV] method of habilitation. As Warren Estabrooks [a certified Av

therapist] puts it, " AV therapy is the application and management of

technology, strategies, techniques and procedures to enable children

with hearing impairments to learn to LISTEN and understand spoken

language in order to communicate through speech. This method is a

joint effort between the parents and the therapist to help the child

integrate hearing, language and spontaneous speech into the child's

personality. It's more of bombarding the child with language as often

as you can and as meaningful as it can be, the rationale behind this:

" Normal hearing kids usually comprehend and use a word spontaneously

after 250 repetitions in ANY condition- through OVER-HEARING, DISTANT

HEARING and in a NOISY environment', while a HI kid who needs as much

exposure is faced with a limited condition, for they seldom pick up

words through over/distant hearing and in an uncontrolled

environment " . This is the same reason why you may see me talking to

le about the same thing over and over again with varying pitch

and tone. The same reason why we have conceptualized a " WORD BANK "

notebook for her keeping track of functional words she might have

missed and needed to learn for every day conversation. Sometimes,

doing it makes me feel awkward, overacting and tired, but it is only

doing so that I can stimulate her sense of hearing and increase her

vocabulary.

So when you happen to see HI kids equipped with proper amplification,

try to talk with them, they may not understand you initially, but

every word you utter adds up to their VOCABULARY BANK.

For ten years now, my family and I have been actively involved in

bringing out the best from le. Exposing her to different

activities like sports, music and painting. Building up her

self-confidence and letting her feel no different from her " ate " ,

little brother, cousins, and other kids despite her disability.

PAMPERING is a " NO-NO " for her we try to treat her as normal as

possible, while giving her responsibilities and implementing

disciplinary action or actions whenever needed.

I have shared my experiences with a number of people, mostly educators

and parents from simple phone conversations and organized seminars,

and now through the CI Hear .

When God gave us le, we knew it was for a REASON and a MISSION

as well. I see this as my RESPONSIBILITY and my MISSION, to be an

instrument, in any way I can, so as to instill AWARENESS to those

unaware and HOPE to parents like me, and often I say: If I have to

walk 10,000 miles, I know I've only walked a thousand " . As seen on her

latest assessment, despite the fact that le exhibits minimal

delays in her comprehension of English Languages structures, she has

an overall language delay of approximately 1 year and 2 months.

Our ordeal with le will be a life-long process-that's for sure,

but it doesn't really matter, because we have always felt the presence

of our LORD from the very beginning, He had provided my husband and I

the means to make all this possible: a very supportive family and

friends…. The STRENGTH, the PATIENCE and WISDOM to help us move on and

act accordingly and like a guiding star; He has led us to meet the

RIGHT PEOPLE at the RIGHT TIME. In this situation, TEAM WORK is a

must! Though I carry most of the responsibility, le's progress

is not solely credited on me as her mother. A big part of it also

depends on her:

SCHOOL - for the formulation and implementations of an IEP

(Individualized Educational Program); CLASSROOM AND SUBJECT TEACHERS -

for conscientiously adapting their methods of teaching to her needs as

well as using her Smartlink FM system to facilitate better hearing and

understanding in class;

SPEECH THERAPIST - for continually improving her grammar and

articulation; AUDIOLOGIST AND IMPLANT PROVIDER - for making sure that

her cochlear implant and other hearing devices are performing at its

optimum level at all times, and I am just so blessed because I know I

have been working with the RIGHT people from the very start.

I do not intend to evoke SYMPATHY but instead UNDERSTANDING and

COMPASSION, not only to le but also to millions of

Hearing-Impaired children who are not given the chance to live a

normal and fruitful life and be a part of the mainstream society. For

parents who are blessed with a child or children like le, may

her story be your source of inspiration, because I too have been

motivated by other HI individuals and with more families whom I have

never met but I know have their own meaningful stories to tell.

A few may have seen how stressful each day is for my daughter, with

all her activities, tutorials, assessments and therapy. Others may

have perceived it as going beyond our limits… going beyond a limit of

a hearing-impaired child. However, like any other ordinary parent who

wants the best for her child… I believe that we are only giving her…

as much as we can, the ADVANTAGE of an unlimited experience to her

limited condition not necessarily to be the cream of the crop but to

be able to develop her HIGHEST POTENTIALS and be the best person she

can be.

We have always counted le as a blessing, and that made it easier

for us to accept her the way she is…but in all honesty… the pain

sometimes remains, it just a matter of not letting it come our

way……our way to this less traveled road.

NOTE: le is 10 years old as of this writing and is currently

mainstreamed at BRENT International School-BaguioCity, Philippines -

Grade 4, under Teacher Doug Cameron, attending after school tutorials

with her shadow teacher, ; Two hours reading program

with teacher Jen Bautista as incorporated in her IEP and attends

speech therapy sessions twice a week with teacher e Palou... As

part of my advocacy to inform those who are unaware of Congenital

Rubella Syndrome, Hearing Impairment and Cochlear Implant, a video of

our ordeal has been uploaded at YouTube.com for viewing…Just key in ..

Amazing Cochlear Implant… VIDEO TITLE: A Road Less Travelled Part 1 and 2.