Gemma Aitken
Gemma Aitken was born on July 15, 2021 with a Trisomy 18 diagnosis. We received this diagnosis at 25 weeks and like many families before and after us, were told that our baby would most likely be stillborn, if she survived it would be a matter of hours or days and if by chance she did live for longer, she would be a burden on our family. At 36 weeks Gemma came into the world looking bruised and battered, weighing a tiny 1.9kg and against all odds she was able to do everything on her own. Covid lockdown had been enforced just two weeks prior, but thankfully our children, Zoe, Ned and Isla who were 9, 8 and 7 at the time had been granted special permission meet Gemma in hospital. During this visit a beautiful Heartfelt Photographer was able to capture some very treasured images.
A week after delivery, we transferred Gemma to our local Public Hospital where she was treated with dignity and respect and was provided with the medical attention in which she was entitled. At 12 days old we were able to take our tiny 1.5kg baby home. The lockdown provided our family with uninterrupted time to bond, there were cuddles galore, so many photos and videos, our house and hearts were full. Our weekly visits to our wonderful Paediatrician and home visits from our amazing Community Nurse became part of our new routine.
As Gemma approached 6 weeks, we were encouraged to investigate some of her limitations. We could see that her right eye looked like it had a cataract, but further examination found it was microphthalmia. Her airways were good, her hearing could be supported, but our biggest obstacle was her heart. Immediately after birth a small murmur was detected which had become progressively worse. After visiting a Paediatric Cardiologist, we discovered Gemma had Tetralogy of Fallot. We started look at corrective surgery but were denied due to her Trisomy 18 diagnosis. We began researching and gathering information and on November 15, 2021 her Cardiologist presented her case once again. However, our girl had other ideas and after her morning feed on the 16th of November, she passed away peacefully with her father by her side. It was very sudden and unexpected, but looking back at photos now, I can clearly see her decline.
We were so fortunate to have four beautiful months with Gemma. She had a real personality, she was cheeky, loved a foot massage and was totally overindulged with cuddles and entertainment from her siblings. I am grateful she didn’t suffer, and she was home with those who loved her. I am so proud of Zoe, Ned and Isla, the strength and resilience they have shown from the devastating day we shared the diagnosis, to being sent to my parents not knowing what the outcome would be at delivery and now as they navigate the trauma and grief after the loss of a sibling. My husband Shane, has been our rock, speaking when I can’t and ensuring that our ‘Gemma Memories’ live on.
Earlier this year Shane and I shared our experience of a prenatal diagnosis at the PSANZ Perinatal Ethics Congress. Children with Trisomy 18 are immediately put into the category of being ‘incompatible with life’. This dialogue is not ok, each case is entirely different to the next. We hope that sharing our experiences, both positive and negative can perhaps assist in seeing a shift with the treatment and language associated with a Trisomy 18 diagnosis.