John's Story

Faith Abigail Brown was my daughter. She impacted on my life so completely and deeply that even sitting here writing this feels like the equivalent of running my hand over an old scar,that twinges and spasms every now and again. No one else notices, but one that I can still feel.

I still remember even now getting the phone call from the hospital asking me to bring Petra straight in as they had gotten some alarming test results and later the doctor demanding that my wife be given more of the labor inducing drug, and yeah I guess I remember threatening to remove that doctor from the room with force. I still remember the absolute silence of Faith coming into this world before hearing the shouts of "code blue", and then passing out after watching my baby turn purple - not blue but purple.

I can remember the physical pain it caused me to hear that my wife had torn out her own drips and tried to make it to the special care nursery as she hadn't even seen her baby girl yet.

I remember everyone saying that they would work out what was wrong. She couldn't swallow, regulate her own body temp, would have an apnoea where her heart rate would drop to nearly nothing (several times we said our goodbyes only to have her soldier on and fight back), and she would turn blue. Later on we found out she lived in a constant state of seizures and was also blind.

I can remember the many "battles" we had within the day to day pains of our normal lives. The world didn't stop and I can recall thinking how could this world be so cruel and surely I must buckle under the pressure. Nine months of testing, no answers (to this day her condition has remained undiagnosed) and endless doctors and specialist visits. I remember a terrible lonesomeness as my "awkward" situation drove my "friends" away. 

The horrific pain of having her die in my arms (which sometimes revisits me in nightmares even now). I was 23 when I buried my daughter, I had failed. Everything about the role of a father is to provide, protect, nurture and to help grow. I had done none of these things in my mind - none.

My son John for weeks after would ask if we could go and "dig her up now?" and that we could use his tonka tractor. Eb's made play-dough cookies and drawings for Faith for a long time.

So the weeks turned into months and the months years. Here I sit writing this. But let me tell you what else I remember. I remember that Faith used to become very still and restful whenever she laid on my belly when I watched tv, Petra used to dance with Faith in the candle light, Johnno accidentally stepped on her once in his haste to play and include her in his games... Reading her stories, Faith loved baths (although we had to make sure we didn't get her nasogastric tube in the water).

I joined a martial arts club shortly after Faith was born and in doing so I found a release. A place where I could push myself physically and leave feeling mentally drained enough to sleep. My daughter Faith had given me a gift - a purpose and a motivation. A way to get up and deal with each day. It's my turn to give back in her name. We practically lived on the children's ward for weeks at a time. And the staff there were amazing. They supported or gave space depending on what we wanted. I can even remember one nurse doing her rounds on the ward with my jiu jitsu belt around her head as she sewed my stripes on for me. We shared most of our everyday life with them each day at some point or another.

So now I figure if we can raise enough money to get a few things for the parents room on the ward, it might just make that little bit of difference in someone else's story. A place for them to retreat too and spend some time on their own without actually having to leave their child. Because let's face it - a seriously injured or sick child is about as bad a nightmare as any parent can have...

Petra's Story

All along, our paediatrician had warned us that Faith might not live to see her first birthday.  Yet when she died at the age of nine months we were profoundly shocked.  One moment she was with us, the next she was gone.  She simply took a final breath and lay at peace at last in her father’s arms.  My beautiful baby girl, no longer with us, and the only explanation the doctors could give was that she was “probably a tragic genetic accident”.  Their reasoning made no sense at all to me.  How could this have happened?  What had we done wrong?  Had my body failed both of us?  I needed desperately to find answers and nobody could give them to me.  What I did not know at the time, was that somewhere deep within me, I had begun a long struggle to understand some of life’s hardest questions.  The answers would not come for a long time but when they did, I realised they were Faith’s last gift to me. 

I was 24 when my husband John and I lost Faith.  We already had two older children who in every way were happy and healthy.  The only abnormal event to occur during my third pregnancy had been the sudden onset of pre-eclampsia around my eighth month.  High blood pressure of this type is a very rare occurrence in a third pregnancy, especially if the first two have been normal.  I felt fine, but as soon as this anomaly was discovered I was told I would have to be induced.  Faith was born a mere five days later at 37 weeks.  I have always wanted as little intervention as possible during my babies’ births, so when Faith was born without an initial gulp for air or a yell to herald her arrival, I was not unduly alarmed.  The attending doctor tried to massage her into breathing, but she continued to lie limp in her arms.  Within a minute, a call went out for the resuscitation team and all I can remember is smiling and reassuring the nurse that everything was going to be fine.  I was still in a daze from labour and probably from the drugs I had taken for pre-eclampsia, but I was not yet concerned.  The glimpse I’d had of my little girl before she was whisked away to an incubator, revealed a face that resembled her sister Ebony’s.  She had dark hair, weighed an acceptable five and half pounds and was very small, petite and pretty.  That anything was wrong only came as a gradual discovery.  The first sign was that she refused to breast-feed.  Or more accurately she did not know how to breastfeed.  She had no sucking reflex.  She also ‘forgot’ to breathe now and then, and I noticed that her eyelids flickered as though there were an electrical short circuit somewhere in her brain.  The computer monitors which registered her heart-rate and breathing showed that she had a good, steady heartbeat but that it would suddenly drop and become irregular.

Doctors had never seen a case like hers.  Outwardly, she looked perfect.  But they surmised that there was continual seizure activity in her brain which disrupted the most basic functions of her body – the ability to breathe, to regulate heart-rate and body-temperature, those simple miracles we take for granted every day of our lives.  As a result, she needed to be closely monitored and we were not able to take her home for three months.  Instead, my husband John and I visited her nearly every day in the nursery, bathed her, sat with her and sometimes dared to hope that her condition would stabilize.  We lived a twenty minute drive from the hospital, and our other two children would go and visit "Teddy Bear House" - a free child-minding service run by volunteers at the hospital while we watched over Faith.  During this time, I fed her with my own breast milk but after two months, she was put onto formula.  As she stabilized and we grew more confident, I would put her in a sling that held her close to me, and walk her around the hospital, up to the cafeteria and back again.  At the same time, she underwent extensive testing both at Geelong Hospital and at the Royal Children's Hospital.  But there were few answers.  She did not have cancer, cerebral palsy or a heart defect.  Her MRI scans showed normal brain development, but confirmed that she suffered constant ‘misfires’ between the synapses in her brain as though an electrician had done a very poor job of wiring her.  To most people, she looked completely normal but when she began to approach nine months she was still like a little rag doll.  She couldn’t see and didn’t cry.  We fed her through a tube and there were no ‘firsts’: no first smile, no raising her head, no reaching or rolling over, no crawling or standing.  The doctors could not give a name to her condition.  The best they could do was to call her cluster of symptoms an “undiagnosed genetic disorder on a metabolic level” -- a tragic accident.  And then they delivered the terrible prognosis: her symptoms were so severe that she was unlikely to see her first birthday.

When she had been re-admitted to hospital at the age of five months with bronchiolitis, this most common of childhood illnesses had almost become too much for her embattled body to cope with.  We realized that we could not ‘fix’ anything any more; there was nothing to be done.  For the first time, we forced ourselves to accept that her condition was terminal.  All the same, we held her, cared for her and loved her.  As parents, we never stopped praying, hoping and loving.  But from then on we learned to live without answers, managing just one day at a time.  All the while, we knew we had to steel ourselves for her inevitable end.

Half a dozen times when she stopped breathing and her heart-rate dropped to a few beats per minute, we held our breath.  Half a dozen times the medical staff brought her back to life, until we decided that she had had enough.  After months of uncertainty, it was clear that for Faith, there would be no happy ending.  If she stopped breathing again, we decided we would let her go.  But still she defied the odds and clung to life.  Every time she reached the precipice she found her way back.  Only once she slipped over the edge and fell.  With a final breath, she floated away and was gone.

We wheeled her down to the morgue and chose a pretty pink lining for her coffin and prepared to say goodbye.  Her funeral was a hazy, surreal experience.  The chapel was full, the music was beautiful and her spirit floated away like the pink and white balloons at the cemetery.  Afterwards, we thought we’d be all right.  We were still a family weren’t we?  I thought I would simply move on and pick up the threads of life but what we hadn’t reckoned with was the reality of death.  When death came, we naively thought it would simply be another stage in caring for Faith, a stage that would be hard, but that we would cope with because we would still somehow have her, be able to care for her, that her death would be an extension of our care for her.  We did not understand that it was so final.

Grief comes in many shapes and guises and perhaps we can only speak of it in metaphors.  Grief is like being hit by a truck, kicked in the guts, or overcome by darkness.  Grief wrenches and tears at our spirit.  I could not rationalize it, I could not contain it, and most definitely, I could not ignore it. Guilt is also a part of grief.  Why had it all gone so terribly wrong?  Were we responsible in any way?  Could we have done more for Faith?  The questions pounded away at me and there were no answers to any of them.

My husband, John, grieved privately and struggled to return to work.  He found release in martial arts and would finally reach the rank of black belt – an undertaking that took six years and every ounce of discipline he could muster.  The children coped better.  Ebony started four year old kindergarten where she made play dough cookies for Faith and included her in her stories and drawings.  Our son John wanted to rescue his sister from her burial place but gradually readjusted, enduring his parent’s clinginess.  The death of a child can destroy the strongest of couples and over 75% of marriages that have suffered an event like ours end in divorce.  It is nothing short of a miracle that ours did not.  We had married in our late teens and had endured a rocky relationship for years.  In that dark time of grief, perhaps we were finally forced to grow up.  Our past troubles seemed so petty compared to this.  It was a tough, hard time but very gradually we came through stronger and more mature.

In 2003 I decided to finish the Arts degree I had begun in ’95, fresh out of high school.  Back then, I had finished my first year, married and started a family.  This time, I returned as a Philosophy major and allowed myself to ask the questions that had plagued me after Faith’s death: What is the meaning of life?  If God is good, why do bad things happen?  What makes life important?  Philosophy gave me the framework and discipline in which to tackle these issues and I loved it.

Within months of my return to university and after consulting a geneticist, we decided to try for another baby.  Because Faith’s symptoms had been so severe, doctors had told us that it was probably a genetic problem with a ten percent likelihood of recurrence.  We decided to take the chance.  There were no tests to tell us how things were going during my pregnancy so I simply held my breath for nine months.  I continued my studies, kept myself busy and finally, six days overdue and after an intense four hour labour, Talitha-Hope  was born on the 15th of January, 2004, two days before the third anniversary of her sister’s death. 
When she gasped, took her first breath and screamed in indignation, my relief and happiness were overwhelming.  My wonderful, healthy baby girl!  As I cradled her in my arms, she began to feed and felt so right.  Everything about her was a miracle: her first bath, her first night home, her first smile. 
With a six week old baby in tow I returned for another year of study, rocking her to sleep during lectures.  A daughter in grade two, a son in prep and an infant with me during my uni classes!  Somehow I managed to keep studying and loved every minute of my crazy life.  Three years later I finished the degree begun a long time ago, then honors and next year, I will complete my Doctorate, the icing on the cake.

Does a parent ever ‘get over’ the death of a child?  Faith’s death is still a defining moment in my life.  Sometimes a voice cries out in me – she did not die for nothing!  The legacy she left me, which I did not appreciate for a long time, was a profound understanding of life in all its complex facets.  In a sense, her final breath was also a first breath for me.  Her last breath gave me the beginnings of a much deeper understanding of life itself, a second chance to appreciate how infinitely fragile, yet how tough, enduring and wonderful it is.