In her short life, we bonded with her in a way like no other (Picture: Kate Hart)
At just under two months old, my daughter Hannah lost her life to a rare genetic condition.
Otherwise known as trisomy 18, Edward’s syndrome is caused by the presence of an extra chromosome in the body’s cells. This affects the development of the fetus.
It’s the same syndrome that will be featured on EastEnders in the coming weeks.
In perhaps a TV first, soap characters Whitney Dean and Zack Hudson are delivered the emotional news that their unborn baby has the same life-limiting condition as my daughter Hannah did.
After soap bosses revealed the upcoming plotline, and that they were working closely with national Edward’s syndrome charity, SOFT UK, to portray it sensitively, I only felt excitement.
It is an excellent chance to raise awareness of the little-known condition on a huge platform.
Every single moment of her life was celebrated (Picture: Kate Hart)
Though my daughter Hannah passed away back in January 2021, at 54 days old, my husband Colin and I still have so many precious memories of her.
In her short life, we bonded with her in a way like no other. She was special to us from the beginning – and brought us so much joy.
To be her mum was the most magical thing in the world, as well as the most heartbreaking.
I discovered Hannah had Trisomy 18 after my 12 week scan. She was surrounded by a lot of fluid and her nuchal fold measured double the size it should have – a sign that she could have had a chromosomal condition.
Further tests discovered she did indeed have Edward’s syndrome – something we’d never even heard of before.
We were told that babies who were diagnosed with this condition had a poor prognosis, but fortunately we were supported and respected in all our decisions by our medical team.
We were told that babies who were diagnosed with this condition had a poor prognosis (Picture: BBC)
We were heartbroken when we got the news, and started the grieving process straight away.
But once we’d accepted what we were up against, we were determined to give our girl the best possible chance at life. To focus on the positives and celebrate every moment.
I can’t deny that the rest of my pregnancy wasn’t nerve-wracking, though; I worried up to the moment she was born.
Telling her brother Nathan, then two, was hard. We got advice from our Rainbows Hospice Link Nurse, Natalie. She told me to be as honest as possible with him, but speak age-appropriately.
We told Nathan that he was going to have a sister, but that she was going to be different. I’m not sure quite how much he understood back then, but he’d talk to my bump and kiss it goodnight.
I remember the first day Rainbows contacted me. I finished the phone call feeling such a sense of relief. They were going to go on this journey with us and offered round-the-clock advice and support – and that support is still going, even now.
We celebrated our first and only Christmas as a four (Picture: Kate Hart)
The charity helped us by sitting in on hospital appointments, asking questions we’d never even thought of and helping dissect what it all meant.
I contacted national Edward’s syndrome charity, SOFT UK, too – and with their help joined a Facebook support group and Zoom support calls, which helped Colin and I to not feel so alone.
There were other people who were dealing with this condition and reading their real-life stories helped immensely.
Hannah, of course, was determined to live, and came out crying on December 4 2020 at Royal Derby Hospital.
Hearing her cries sent Colin and I into tears; she’d made it!
When he met his sister in hospital, Nathan was so excited and full of pure joy.
When we arrived at the hospice, it felt like we were enveloped with a huge hug (Picture: BBC)
Every single moment of her life was celebrated. After she lived for 12 hours, we celebrated with a cake and a candle and by singing to her. We understood how precious each day was.
After one night in hospital, our family moved to Rainbows Hospice for support with her care, our emotional wellbeing and to make memories. We needed help to build our confidence in caring for a baby with complex needs.
When we arrived at the hospice, it felt like we were enveloped with a huge hug of love from the nurses. It was just like coming home, and everyone was so kind to us.
Hannah was like a VIP, everyone knew her name and they all appreciated how precious our time with her was. Anyone who met her told us how beautiful she was, which we of course agreed with.
Although we were devastated to lose her, we were so grateful for the time we spent together (Picture: Kate Hart)
For the next six days, Rainbows helped us to learn how to feed her and we made memories – we painted her feet, took fingerprints, and went swimming together in the hydrotherapy pool.
Hannah was such a water baby, and couldn’t have been happier than when she was in it; they are some of our precious memories. We went for walks in the beautiful gardens, too – even though it was winter, we all loved it.
Nothing was ever too much trouble for anyone at the hospice. And it wasn’t just about Hannah, it was about all of us, and how we were all coping.
When Hannah’s health started to deteriorate, Rainbows rang around local funeral homes, too, and sorted out the inevitable for us. It took a load off our minds as it’s the last thing a parent with a child who doesn’t have long left wants to do.
We returned home when Hannah was one week old and ended up celebrating Nathan’s third birthday together, as well as our first and only Christmas as a family of four.
We dressed Hannah up in a tiny Santa outfit, and (attempted to) take photos of us all together. We have about 50 photos, but none of us are looking at the camera at the same time. No family is perfect, after all!
On January 27 2021, Hannah died peacefully at the home in our arms. Although we were devastated to lose her, we were so grateful for the time we spent together.
We have even made a memory garden at home for us to remember her in (Picture: Kate Hart)
Looking back, we wouldn’t change anything and would do it again in a heartbeat. She will always be our precious daughter and Nathan’s sister – we have pictures of her around the house, and talk about her all the time. I’ve even made Nathan, now five, his own photo album of Hannah, too.
Naturally, Nathan still has questions, and we answer as honestly as we can – determined to keep the memory of his sister alive for him.
I found the anniversary of her birthday the hardest, but we celebrated together by baking a cake, buying balloons, singing songs, and visiting the remembrance garden at the crematorium. We have even made a memory garden at home for us to remember her in.
After her death, I started working for SOFT UK, which I feel helps to keep Hannah’s memory alive.
From a personal perspective – no matter how the EastEnders storyline pans out, I hope that it will result in more people researching Edward’s syndrome. It will help open up so many, much-needed conversations and create awareness of this little known condition.
To us, Hannah’s life wasn’t a tragedy – it was a blessing.
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To us, Hannah’s life wasn’t a tragedy – it was a blessing.
