I’m Kate, wife to Colin, and mother to two beautiful children, Nathan (aged 4) and our little baby Hannah who is now in heaven.
At the routine 12-week appointment during my pregnancy, we discovered that something wasn’t quite right. I was referred to a nearby hospital for a specialist to take a closer look at our developing baby. She identified a number of worrying signs, and I was offered a CVS (chorionic villus biopsy), a test where a sample from my placenta was taken for testing for chromosomal abnormalities. In addition to the physical signs on the scan (excess fluid and an enlarged nuchal fold measurement) the routine screening results showed a high chance of having a baby with serious problems. We later received the conclusive results that our worst fears had come true and that our baby girl had Edward’s Syndrome or Trisomy 18.
It’s called ‘Trisomy’ because instead of the normal two sets of chromosomes from each parent, our baby had an extra set on the 18th pair, meaning she had 47 chromosomes instead of 46. She had Full Trisomy 18, meaning that the 18th chromosome had 3 copies instead of two and the condition affected every cell in her body.
It wasn’t a good prognosis - most babies with Trisomy 18 die within two days of birth and only five percent make it to their first birthday.Kate, Hannah's Mum
As she grew, we saw more from the scans and they confirmed that she had a heart condition, Tetralogy of Fallot; issues with the development of her brain; a problem with one of her kidneys; and the trademark clenched fists of a Trisomy 18 baby. She was also little (on the 3rd percentile) and she was lying breech. But her heart kept beating inside of me and she grew along her growth line. I felt safe whilst I could protect her.
It was a turbulent and an uncertain time as none of the doctors could tell us how long we’d have with Hannah and if we could ever bring her home. We struggled to come to terms with the diagnosis as parents, not to mention how we could prepare our son for what lay ahead.Kate, Hannah's Mum
However, with the support of our local hospice, Rainbows, we were guided about how to speak honestly and in plain language he would understand, so that he would understand what lay ahead. It was difficult to enjoy the pregnancy, but we tried not to focus on the “what if’s” and to look forward to her arrival.
Hannah was born crying! Colin and I have never heard a sweeter sound. Despite her condition she was strong enough to breathe on her own and latched to feed, within the first hour she was born. She was doing really well, and we just soaked up the cuddles and took many, many photos.
We arranged for Nathan to meet her within 24 hours of her birth, despite being under Covid lockdown 3.0 at the time. The hospital appreciated the unique circumstances and made this possible. There isn’t a more beautiful video of Hannah’s life, than the moment she met her brother. He was positively squealing with delight and clapping his hands as he tried to sit still enough for us to place the tiny bundle of his baby sister, on his lap. He immediately kissed her twice and then in his very independent way, told us, “You can’t help me!” He wanted to do it all himself!
Their bond grew from there. The sibling he had been waiting for, had finally arrived. He often asked to hold her and would sing to her if ever she got upset. She was given many wet, slobbery kisses by him and he took pride in helping to bottle feed her. We celebrated every day with Hannah as we knew that our time would be precious, and we would light a candle and sing ‘Happy birthday’ to her every day.
During her short life we made beautiful memories, including having her Christened; enjoying a family dip in the Hospice hydro pool; painting hands and feet for mementos; attending the Christmas Eve service together at church and celebrating Nathan’s fourth birthday and Christmas as a family of four.
We don’t regret a thing about her life and were blessed enough to spend 54 days with her – just short of two months. Hannah passed away peacefully at home in our arms, while Nathan slept upstairs. She slipped away slowly over a few hours, with just Colin and me, surrounded by so much love.
We didn’t know how Nathan would take the news that his sister had died. But he was quite matter of fact about it, not fully understanding the permanence of the situation for weeks. It was only when the funeral director collected her, that he cried out, “Don’t let him take her!” That was possibly one of the most painful moments of her passing.
However, being so young, Nathan has never dwelled on his sister’s death. He asks lots of questions and talks about her often. But it’s not something that stays with him long and he can easily change subject and be distracted by something else.
He has his own photo album with pictures of her and we have a few special candles that we light together on important anniversaries. Together we transformed the garden at the front of our house into a Remembrance Garden for Hannah. It has a bench, a birdbath, many beautiful roses, and a cherry tree that blossoms during winter – the time that she was alive.
On the first anniversary of her first birth, we baked a cake for her, lit candles and sang to her. We also blew up lots of pink balloons and visited the Memory Garden at Rainbows where we shared a picnic and watched the sun set.
Hannah will forever be our daughter and Nathan’s little sister and we’re so grateful that we were blessed by her beautiful life.