Intended for healthcare professionals

Practice A Patient’s Journey

Destined to die

BMJ 2011; 343 doi: https://doi.org/10.1136/bmj.d3625 (Published 01 July 2011) Cite this as: BMJ 2011;343:d3625
  1. Pauline Thiele, patient1,
  2. Simon Blair, paediatrician2
  1. 1Red Hill South, VIC 3937, Australia
  2. 253 Cranbourne Road, Frankston, VIC 3199, Australia
  1. Correspondence to: P Thiele liam194{at}gmail.com

At 18 weeks’ gestation Pauline Thiele’s baby was diagnosed with trisomy 18, a usually lethal syndrome. Her problems began when she chose not to terminate the pregnancy

Parked on the side of the road I listened as my obstetrician told me over the phone that my serum screen result showed an increased risk of trisomy 18. 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.

I searched the internet and downloaded reams of information. The next day an emergency amniocentesis was performed. I watched my baby on the monitor and heard the fast rhythm of the heart beat. The sonologist explained that the news wasn’t good, explaining that, as well as trisomy 18, the baby also had a lumbar spina bifida. 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. The baby moved and I welcomed the movement, and I knew that I loved this little one and would not take his or her life with a termination.

Unfortunately the communication from my family, although well intended, did not help; with each foisting their personal opinions on us, with the exception of my mother, who supported me unconditionally. Throughout my pregnancy four friends were to provide me with a great deal of emotional strength. My greatest strength, however, came from within and I was thankful for this inner strength that my life’s experiences had supplied. With sadness I watched my husband struggle with the impending death of our child.

My obstetrician confirmed the diagnosis and informed us that we were to have a son, whom …

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