Lacie-Jo’s story
Lacie-Jo’s journey: A story of strength, love, and resilience
Written by her mum, Rebecca.
Lacie-Jo was born in the early hours of a beautiful August Friday, at the start of a bank holiday weekend. She was perfect to me in every single way. However, shortly after her arrival, we received unexpected news – she had a cleft palate.
It was small and unnoticeable at first, and nothing had shown up during my pregnancy. My world felt like it was crashing down. The fear of the unknown was overwhelming.
My world felt like it was crashing down. The fear of the unknown was overwhelming.
Doctors told me she might struggle with feeding, breathing, and hearing. But Lacie-Jo quickly began to defy those odds. Her hearing was unaffected, and, with a little help from us gently squeezing the bottle teat, she was able to feed using a regular bottle.
We stayed in the hospital over the bank holiday weekend, waiting to be seen by the cleft nurse. On Bank Holiday Monday, the cleft nurse arrived. She gave me so much information all at once, and that’s when the panic truly set in.
I was advised to reach out to CLAPA to try some specialist bottles, and that’s when we discovered Dr Brown’s bottles. Lacie-Jo took to them straight away and, just like that, our journey officially began – us, Lacie-Jo, and the unknown path ahead.
I was advised to reach out to CLAPA to try some specialist bottles, and that’s when we discovered Dr Brown’s bottles. Lacie-Jo took to them straight away and, just like that, our journey officially began – us, Lacie-Jo, and the unknown path ahead.
For months, all I could think about was the looming surgery. The general anaesthetic. Lacie-Jo being taken down to theatre.
In early 2020, we received a surgery date at Manchester Children’s Hospital. But, after hours of waiting at the hospital, it was postponed due to the start of COVID. We were sent home, heartbroken, to wait again.
Two months later, during the peak of the pandemic, another letter came. This time we were headed to Alder Hey Children’s Hospital. There, we met the most incredible surgeon. Before we knew it, Lacie-Jo was taken down to theatre.
She was so tiny, and so happy, but my heart was in pieces. For four-and-a-half hours, I paced the hospital corridors, crying and praying it would all be okay.
And it was. I finally got the call to go and get her. Holding her again was the best feeling in the world. She recovered like the little champion she is, and healed beautifully.
Holding her again was the best feeling in the world. She recovered like the little champion she is, and healed beautifully.
Three years later, we learned she needed a second surgery. The first had helped, but her palate still wasn’t functioning as it should, and was affecting her speech. On 23rd July 2023, everything changed – the second surgery was a success, and our fears began to ease.
Now, nearly six years later, we are finally finished with surgeries. We focus on her speech and language, working hard in school and out, up to four times a week. She’s becoming a little chatterbox, smashing milestone after milestone, and creating new sounds all the time.
That said, every day isn’t always easy. Sometimes, Lacie-Jo gets frustrated when her words don’t come out quite right. But, with a helping hand and a little patience, she always finds a way to be understood.
Lacie-Jo is the most loving, caring, brave, and inspirational little girl. Her entire family is so proud of all she’s overcome. This journey we are on, with all its ups and downs, has been nothing short of incredible – and we’re endlessly grateful for the outstanding cleft team that’s been beside us every step of the way.
We are so proud of our brave little girl. She is our warrior, our light, and our inspiration.
