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Nicole & Bonnie Luella's Experience With Cleft Palette

As I type this, I don’t know how to type this out.

How was this missed?

My little Bonnie Luella was born at 34 weeks. After 11 days tube feeding, a hot cot & light therapy she was allowed home but we knew her feeding wasn’t right.

After 9 months of poor weight gain, poor eating, sleepless nights and being made to feel crazy we were let down by not one but several health professionals.

We found out she had a cleft palette.

She also now has glue ear, an eating aversion, craniosynostosis, stigmas in her eyes and the list goes on.

We are now waiting for a MRI & CT scan as well as more genetic testing.

They should have picked the cleft palette up when she was born but they didn’t. I could have known more and I could have helped her more.

We now have some of the right equipment but little Bon is behind, she doesn’t eat and she doesn’t do stuff a “normal” baby would do.

She’s so happy even though she has been through so much.

We have a long road ahead of us and hopefully this is the start of getting her better as well as getting more answers.

The past year has been so hard and I feel like what we were meant to enjoy has been taken away from me and Bon.

I didn’t write this post for sympathy but I want to build awareness and show not all disabilities are visible or obvious.

To be continued…

Nicole x

Instagram - @bonnieluellas_mama

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