The grief of not knowing our baby

Last updated 06:01 21/07/2014

GRIEF: Christina found the hardest part was people saying nothing at all.

Charlotte's prints
SHATTERED WORLD: Christina and her husband named their 24-week-old baby girl Charlotte.

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Like many young couples starting out, we were full of hope for the future. Hope that one day we would have a family with two, maybe even three, children. Like many couples we also waited until the time was right to start our family.

Sick of all the questions of when we were going to have children and all the over-analysing looks whenever I chose to drink coke instead of wine, we finally decided the time was right.

We had been married three years and my husband left halfway through a three-year tertiary course to go back to work so that I could stop work to look after a baby. 

We were pleasantly surprised when I fell pregnant after only one month of trying. Being a teacher, the timing was great as I could finish out the year with the baby born close to the Christmas holidays.

I knew the first 12 weeks were crucial but remained quietly confident because miscarriage happens to other people, not me.

Desperately I wanted to see my baby on the 12-week scan but had decided not to go for the pre-screening tests. My husband and I are practising Christians and had decided that we would love any child. I said those words to my midwife so flippantly that I never knew the next few months would test those words and our faith to the core.

My midwife recommended a dating scan. I went along with my husband and mother-in-law, so excited to see my baby for the first time.

The joy that filled my heart when I heard the heartbeat and saw the wriggling shape of a baby on the screen was truly magical. I felt on top of the world.

The ultrasound technician, mistakenly thinking we were there for the pre-screening tests, announced that my baby had a nuchal translucency measurement of 8.3mm.

"Is that good?" I asked naively.

"No," was the silencing response that sent me crashing back to earth.

Desperate to find answers about what this measurement meant, I turned to Doctor Google. The information was overwhelming. None of which could answer my agonising question: could my baby be born normal?

The next three months were a rollercoaster ride of false highs and terrible lows. We met with numerous specialists and were given all sorts of possible reasons for the large measurement, Turners Syndrome, Downs Syndrome, heart defects. We were told our chances were 60 per cent chromosomal problem, 30 per cent heart or other organ problem, and 10 per cent nothing. 

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A one in 10 chance that our baby would be born 'normal'. A chance I held on to through the multiple times I was asked to consider termination.

I had an amniocentesis and received news that the problem was not chromosomal and the baby had the right number of chromosomes, news we greeted with relief and elation. If it was not chromosomal, it could be fixed, I convinced myself.

We saw this as an answer to prayer and began to relax a little and feel the joy of expecting again.

That was short-lived.

At 19 weeks, we had an anatomy scan that showed the baby had multiple defects, the worst of which was an undeveloped heart and fluid on the brain. We were told to expect the baby would be born severely disabled with little quality of life.

Another termination was offered but we decided to push on in hope of a miracle.

Two weeks later, another scan gave us the most shattering news: ''Your baby will not make full term." Words that will resonate in my mind forever.

All our hope, all our faith, all our dreams torn apart. How do you prepare yourself for your baby's death inside you?

Almost two weeks later at another scan, I saw my baby's silent and motionless outline on the ultrasound screen.The technician did not need to say anything, I already knew.

Two days later, after a seven-hour labour, I held my beautiful 24-week-old baby girl in my arms. We named her Charlotte.

Miscarriage and stillbirth are a strange kind of grief. It's not grief for someone you know, but grief for someone you will never get the chance to know.

The first few days that followed showed a great outpouring of support and love. Flowers and meals flooded in and we were briefly distracted from our pain. But after a week or so, my husband went back to work, the flowers and cards stopped arriving and that was when the grief truly began.

The feeling of being completely alone.

It's a strange thing recovering from a stillbirth. Your body is confused and still yearns for something that is missing. I struggled with my husband's lack of emotion, how he could return to work after only a few days and act like nothing had happened. 

I learnt however that distraction was his way of dealing with his pain.

I returned to work six weeks later and I found the hardest part was people saying nothing at all.

In the months following losing Charlotte, tests showed that she had a rare condition called an unbalanced translocated chromosome. This condition was not picked up on our amniocentesis because it does not affect the number of chromosomes. 

Both my husband and I were tested and we discovered that my husband has a balanced translocation which means we have a 25-50 per cent chance of having a similar outcome with subsequent pregnancies.

Once again my world was shattered. What happened to Charlotte was devastating, but now we were being told this could happen again! Our prospect for a family was now in limbo and I began to wonder if we might ever have a family, a question I am still yet to have answered.

We are now faced with a heavy choice, roll the dice or wait 18 months for IVF with Pre-implantation Genetic Diagnosis (PGD). IVF with PGD is where they test multiple fertilised embryos to find the genetically viable ones to implant, a procedure with a hefty price tag and no guaranteed outcome of success.

So our journey continues.

A year on, I have peace about my loss but I am still never sure what to answer when a stranger asks if I have children. It's a question far more loaded than the asker ever realises. 

The grief of stillbirth does not go away but you learn to live alongside it. It has a tendency to rear its head unexpectedly and I still find myself occasionally crying myself to sleep.

My faith in God has been severely tested. I have a feeling the rollercoaster ride has not ended, but I believe our faith will carry us through, whatever the outcome. 

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