Wonderful testimony – ‘the whole rollercoaster ride had been worth every bump, just to be able to hold my tiny son’

I mentioned earlier this week the wonderful story of a woman who resisted pressure to have an abortion when her baby was discovered to have a tumour in her heart. Her daughter is now 19 months old and doing well.

Babies with serious disabilities don’t always have such good outcomes however. But even when there is no real hope of survival love and hope do not have to die.

There is an amazing testimony in the British Medical Journal today titled ‘Destined to Die’ about an Australian woman, Pauline Thiele, who discovered her baby was affected by Trisomy 18 or Edwards’ syndrome.

Edwards’ syndrome is a complex chromosomal disorder, in which there is an extra 18th chromosome. Children with this disorder have limited capacity for survival, and severe developmental delay is usual in survivors. Most children end up dying very early in life, usually of cardiac or respiratory failure.

Pauline’s description of her reaction in hearing the diagnosis is gut wrenching:

‘My world felt like it had been turned upside down and I listened in stunned silence as he tentatively told me that our 18 week old baby was not going to live. Any glimmer of hope that I had been holding onto disappeared. The weekend was tumultuous and I struggled with the realisation that the dream of raising this child would never happen.’

But when the baby moved she said she ‘knew that I loved this little one and would not take his or her life with a termination.’

Although some of her family’s initial reactions were not helpful she was supported by her mother and four friends. However, apart from a supportive GP, the lack of understanding she received from other doctors made things very difficult.

‘Without any referral to genetic counselling or paediatrics my decisions were based solely on information retrieved from the internet and I was left feeling abandoned by the medical profession.’

Eventually she tracked down four American paediatricians via the internet who provided her information by email. Later she discovered a local paediatrician and palliative medicine specialist who offered to support her through the birth. But then movements stopped at 36 weeks and it confirmed that her baby’s heart had stopped beating.

‘With a midwife’s firm guidance Liam was born quickly. Tenderly I held my son and realised that the whole rollercoaster ride had been worth every bump, just to be able to hold my tiny son. After delivery our paediatrician entered the room and cradled my son tenderly, gently patting him on the bottom. Watching this interaction, I felt my heart swell with love for my son and in gratitude to this man for the fight that he had fought. Conversing easily, the paediatrician commented, “If a baby can know stress in utero then surely it can know love. Liam knew that he was loved.” These words made the whole experience worth the heartache—just for my son to know that he was loved.’