It was a gloomy morning on the 22nd day of November year 2005 when I gave birth to EC via caesarian section operation.  EC was a high risk baby due to measles (rubiola) that I suffered from during my first trimester of pregnancy. No one could imagine how stormy the history of my pregnancy was.  During that time I was told frankly by a resident doctor that the risk for congenital abnormalities to my unborn child was so high. I was not given any hope to cling on to so all the possible complications were laid out to me. My unborn baby was given a week to live because I was also told that I had a great chance of suffering from spontaneous abortion due to high fever brought by the infection. But if by chance the pregnancy continued still the probability of having a still birth was high.

It was so difficult facing all of these alone.  My husband was not by my side when all of these happened.  He was and still is working far from home.  Our communication is only done through series of phonecalls.  We only get to spend time together as family during vacations, a very short one ranging only from 2 to 3 months. 

One week passed without spotting.  Later on the ultrasound showed a fetus growing steadily in my womb. Peace of mind was an elusive obsession on my part.  Physical deformity and mental retardation were two things that I feared the most among the probable effects enumerated by the resident doctor.  Dreams of terror were constant fraction of my sleep.  But then prayers guided me through out my ordeal.  

I was closely monitored because intra- uterine growth retardation of the fetus was detected on the ultrasound.  I was put on a device called electric fetal monitor to keep an eye on my baby.  One day, a fetal distress happened.  A drastic decline of fetal heartbeat (bradycardia) warranted an immediate CS operation.  During the delivery I knew then that something was wrong.  Silent message was conveyed to me through the frantic paces and whispered voices of my OB- GYNE, nurses, medical aids and pediatrician.  Still groggy, I overheard bits and pieces of their hushed conversations.  Also the span of time before hearing the first cry of my baby was so long. Thus in my mind, i kept on praying for a miracle. Finally my baby was shown to me but I had a vague picture of how she looked like because I was fighting off the effects of anesthesia. I was then told soon after that the APGAR scores were low.  My baby was so limp that her reflexes were too weak. I wanted back then to see if her body parts were intact but finally I succumbed to sleep.

I woke up hours later without my baby beside me.  I was told that from the OR she was immediately brought to Neonatal Intensive Care Unit.  She had a laboured and rapid breathing (tachypnea) for an unknown reason.  Four hours after the delivery she was diagnosed with pneumonia. To top it all a heart murmur was heard by her pediatrician one day so she was screened for PDA also.  But the result of the ECG brought hope to my weary soul it turned out to be negative.  The hole in EC’s heart i been told was with in the normal level, it would close within a few days.

During my 2nd day of stay in the hospital I was given permission to visit and see my baby at NICU. Tears flowed from my eyes when I saw her frail little body lying in the bassinet yet full of life amidst the apparatus connected to her tiny body. Immediately I checked her body parts hidden behind the blanket, I checked her arms and legs and counted her fingers and toes.  Viola everything was complete.  I could not ask for more, GOD has not failed me once again.  

 I was released from the hospital on the 3rd day but my baby had to stay for another 11 days because she was subjected to 14 days of antibiotics.

 

 

On the 9th day she was transferred from NICU to the recovery room. But then I saw a huge blister on her right foot where the previous IV needle was inserted.  I was told by the attending pediatrician that the needle was dislocated from the vein.  As a result, the muscle and the skin above it were burnt after giving a dose of antibiotics through IV infusion. The blister ruptured and a huge wound developed.  They treated it alongside with the pneumonia for fear of being infected and developing gangrene. 

 

 

 

But then her tiny body was pushed to its limit. They could not find any veins at all because she was edematous (namamaga).  So they decided to give the antibiotics through Intramuscular infusion.  How it broke my heart to see and hear her crying out in pain 3 times a day for 2 days in a row.  Somehow I wanted them all to stop but I had to bear the pain.  Giving complete dose of antibiotics was very necessary.  Relief finally came when at last they found a vein where heplock could be inserted.   The antibiotics was given through it instead of injecting through IM.

After giving the complete dose of antibiotics Newborn Screening was finally done.  She was cleared for any disorder and was then given a permit to be brought home. She was healthy but needed to gain weight because she was too small for her age.  But I was full of hope then that everything would pass smoothly after that. Little did I know that another test of our faith on GOD is looming.

 

 

Days following her two month birthday she suffered from a rare disease called pertussis. It is a life-threatening illness to infants specially those less than 6 months old. Oxygen tank was always on standby.   Support to EC’s respiration was needed because she had a hard time breathing and always got blue (cyanotic) during bouts of coughing. She was subjected yet again to another 14 days of antibiotics.  During that time I thought that maybe our baby was not meant for us and that my husband would not be given a chance of seeing let alone holding his first born.   I even asked GOD to let His will be done with and never made EC suffer that much.  But GOD is great He let EC lives. 

Finally when our baby was 3 months old she was united for the first time with her father.  That moment was very emotional; my husband was fighting back tears all the time.  He could not believe that at last he was holding his much-awaited baby.   He said it was so hard knowing that our baby was very sick yet he could not do anything about it.  He could not even go home to be with us because he was bonded by the contract.  Finally seeing them together for the first time with our baby on his comforting arms somehow gave me security and peace of mind.

 

On the 4th month we decided to dedicate our baby to the Lord.  Elijah Cyrene, a biblical name was given her to give honor to God’s divine intervention in her life.  While EC was carried as nickname to ward off all the hard times and make the future’s trials just easy for her to overcome.

 

After 2 months, vacation as usual was over; bidding my husband goodbye with our baby on my arms was always painful.  

Time passed and I began to observe something unusual on our daughter.  Compared with other babies with the same age as EC her motor skills were apparently delayed.  After 4 months EC’s pediatrician requested for hearing and optha screening.  But then after EC survived all that had happened to her, we decided to entertain no more negative thoughts from then on.  Since we already offered EC to the LORD we strongly believed that He would not allow again another sickness to harm our little daughter’s life.  Our trust on Him was so great that it could even moved mountains so to speak.  So we decided not to follow the pediatrician’s advice and soon changed pediatrician to start anew.  That was the worst judgment ever that we did which eventually we would regret for the rest of our lives.                                            

Days passed but still there was an unrelenting thought on my mind regarding EC’s odd behaviors.  But I always shrugged it off.  I continued to remind myself of our promise to trust fully the will of GOD.  Later on I considered my motherly instinct as paranoia because of all the things that we had been through with our baby.  But then constant observations on EC kept on bringing back that insistent notion….

EC is not easily startled with sudden loud sounds even when she was still a baby. I even showed my sister in law back then how odd my baby was.  I banged pans near my sleeping one-month old daughter but she did not show any sign that she heard a sound.  She did not even turn on her sleep.  We tried so hard to convince ourselves that everything was okey with EC.  We continued to believe that maybe there were really children whose sleep was so deep they could not be disturbed by loud sounds.  But my sister in law said it was kind of weird because all her children were easily bothered by loud sounds even on deep sleep.  But then I lost all my courage to bring the matter up to my husband whose unwavering faith to the LORD kept him on track.  He never failed to remind me of prayer’s healing power.  Many times my faith wavered but he would tell me not to stop trusting GOD for He would grant us our prayers for EC. 

When EC was about 6 months old, a peculiar head movement was observed.  She could not control the side to side and rhythmic pendulum-like movement of her head.   It became so obvious to people that something was just not right with our baby.  Everywhere we went people turned curious eyes.  Some even dared to stare and ask questions to which I could not muster an answer.

After several discussions over the phone my husband agreed to my idea of bringing EC to a pedia-neurologist for consultation.  The first specialist that I sought an advice from was bewildered by the uncommon head movement specially after the results of EC’s EEG and cranial ultrasound turned out to be normal.  He said it was his first time to encounter a case like that and concluded that there was nothing wrong with EC.  After several consultations with him I decided to seek a second opinion.

This time a woman pedia-neurologist that I specially searched for was consulted.  She requested for an MRI to rule out brain tumor.  The result turned out to be normal yet again.  It was then she discovered upon physical examination that simultaneous with the head movement was the subtle side to side movement also of both EC’s eyes.  She then diagnosed it as spasmus-nutans which she said would fade away on its own with out medications before or after EC turned 1 year old.  Just like what the brilliant doctor said EC’s strange head movement vanished several months following her 1st birthday. 

 

 

But then the difference on EC’s developmental milestone in comparison with her peers became so apparent when our daughter turned 2 years old.  We could not deny it anymore.  EC has speech delay and I was dreading the cause of it.  The 2nd fear of mental retardation came surfacing again…in some cases autism is said to be caused also by maternal rubella/rubeola infection.   

Finally on my husband’s vacation he saw for himself EC’s developmental delays.  We decided to bring EC to a developmental pediatrician for assessment.  Autism was ruled out.  Upon knowing my history of pregnancy the specialist immediately requested for a hearing screening and referred us to a hearing care and service clinic. The result of the hearing exam confirmed my long- time observation on EC. She was diagnosed with asymmetrical bilateral sensorineural hearing loss or nerve deafness.  Sensorineural hearing loss is caused by damaged sensory cells (hair cells) in the cochlea.  It is a permanent type of deafness that will not get any better but can get worse overtime.

 

Her ability to acquire language and to communicate with the rest of the world was greatly affected.  We were told that EC needs a very intensive speech therapy in order for her to get hold of speech.    

 

 

 

During the routine history interview the audiologist asked us “knowing the history of your pregnancy why did you not bring EC earlier for hearing screening?” The question kept on echoing on my mind.  We were dazed as to what to think.  We were further informed that maternal rubella/rubiola infection is the leading cause of pre-lingual deafness here in the Philippines.  But early detection and intervention are the keys to combat the negative effects of Hearing Impairment.  Sudden rush of emotions overcame us that day.  Sorrow, fear for EC’s future, denial to acceptance and hope for solution were wrecking havoc on our minds.  We were simply devastated with the result.

 

 

 

 

 

If only we followed our pediatrician’s advice, if only we could bring back time, if only the hearing loss was detected sooner and if only EC was placed with hearing aids when she was still a baby maybe she can talk just like her hearing peers do. Maybe she does not have that hard time learning, coping and blending with other kids in school.  But soon realization set in.  We can not bring back those lost time.  Blaming each other would not help us to get through with this yet another trial in our married life.  We need to be strong for EC.  She will get all her strength from us and she needs us now more than ever.  Then acceptance finally came in although our grief still goes on.

 

 

 

Writing EC’s life story in someway brought up the sorrow I am still suffering from.  Crying in between words was inevitable.  From the beginning up to now EC has been through a lot of hard times.  But GOD willed her to be strong that was why she survived them all. One time while I was writing EC’s story tears just kept on flowing from my eyes.  The pain of remembering all that had happened surfaced again.  But EC came to me and wiped the tears from my eyes with her bare hand as if understanding everything.  She was shaking her head as if telling me not to cry.  EC is our source of strength and inspiration to fight back. 

 EC was placed with hearing aids and soon has begun to receive intensive auditory verbal therapy.  GOD on His very special way guided us through out the whole process.  He gave us special people that could help us manage EC’s hearing impairment.  Relatives on both sides of the family have been so generous in helping us financially.  They provided us with loans necessary to buy EC’s hearing aids. Her speech pathologist has shown and taught us on how to help EC to fit in to our world, the hearing world by discriminating sounds which are meaningless to her at the beginning.  Even her teachers in playschool have been very understanding with EC’s condition.  With their own simple ways they have helped us.

 

 

Succeeding hearing exams further brought us fear though.  EC’s right ear has severe hearing loss and still benefiting from hearing aid.  But her left ear has shown a very profound deafness and even using powerful hearing aid has proved to be futile. We vowed then to ourselves that we will do everything to help EC participates fully in life.  We committed ourselves to the goal of giving EC the closest to normal hearing possible.   We want to give her the chance to marvel at the diverse sounds of the hearing world, to enjoy music, and to help her localize the source of sounds hence warning her of impending danger.  Impossible the things may seem at the beginning but somehow we will make them real.  

That was when we came to a decision through the help of course of EC’s speech pathologist.  She enlightened us with the idea of cochlear implant and even gave us a push when we were about to give up our plan for EC.  She further advised me to attend seminars about it.  The cochlear implant is the only hope for people with severe to profound sensorineural hearing loss to hear, listen and speak.  It is a new technology now available in the Philippines.  Through it and the series of therapies after operation, EC will be given a higher chance of hastening the learning process which eventually will help her in closing the gap on speech and language delay that her hearing loss is causing her.