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Lenny-Rose

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Baby Lenny-Rose with a 'seven months old' milestone card

When baby Lenny-Rose was born nine weeks premature, her parents Charlotte and Aaron feared for her future. She was born very ill and spent a long time in St Michael’s Neonatal Intensive Care Unit (NICU) being treated. Her mum, Charlotte, told us about Lenny-Rose’s journey.

“Lenny-Rose came into the world with a range of illnesses that she fights every day. She was born with tumours on her heart and brain and tuberous sclerosis – an illness that causes non-cancerous tumours to grow on her body. 

At just two days old, doctors in NICU started her on a medication called Sirolimus, designed to shrink her tumours bit by bit. She was the first premature baby to trial it in the UK – it was scary, but we knew we had to give her every chance possible. This wasn’t our first time in NICU. We were there in 2016 with our middle daughter, too – but Lenny-Rose was so sick, it was very different this time around.

We spent over two months in NICU and during that time Lenny-Rose had to have a blood transfusion. She’s our little fighter, but it was heartbreaking to see her fight so hard, so early in life.

We were given a 0% chance of her survival after birth. She was on 24-hour care and a ventilator. We’d already lost a child in 2019, so we were devastated at the idea of history repeating itself – especially with two daughters at home, worried sick about their sister. I was in so much pain after my caesarean, but we kept it together for our girls.

Charlotte, Lenny-Rose’s mum
Lenny-Rose as a baby being held by her two older sisters

 

Lenny-Rose was cleared to go back to our home in Bristol after nine weeks, but ever since, we’ve been in and out of Bristol Children’s Hospital for check-ups, treatment and sometimes long stays. Because she’s vulnerable, she picks up bugs and colds very easily and they affect her more than they would most babies.

In late 2023, at about five months old, we found ourselves back in Bristol Children’s Hospital for longer than usual. We found out Lenny-Rose had picked up bronchitis and coronavirus – both illnesses attacked her lungs and her breathing.

The staff in both NICU and Bristol Children’s Hospital made us feel welcome, like she was in good hands.

Charlotte, Lenny-Rose’s mum

I am so thankful to everyone who helped Lenny-Rose after her birth. If it wasn’t for them, she wouldn’t be here today.

Lenny-Rose and her two sisters, mum and dad in front of the Christmas Coca Cola lorry

She’s now seven months old and enjoying life at home with her big sisters. Her health can make things difficult and scary at times – but she has defied all odds before and we know she’ll continue to be brave and strong.

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