Lambdoid Craniosynostosis
Maeve's Story
Maeve the Brave!
Maeve's Mum Taylah tells their story...
At birth, Maeve was diagnosed with severe Hydrocephalus, a neurological disorder caused by an abnormal build-up of cerebrospinal f luid in the ventricles (cavities) deep within the brain.
A VP shunt and Rickman reservoir were placed at 4 days of life to drain the fluid surrounding her brain. Mum Taylah recalls: “Maeve had an abnormal shaped head when she was born and it got worse as time went on. When I questioned it, I was met with, “this is just her head shape because of the fluid and shunt placement”.
After being discharged, Maeve was rushed to emergency in respiratory distress on two separate occasions. Both times nothing was found to explain her symptoms.
Maeve was then put under general anaesthetic for ENT, Gastroenterology and Respiratory exploration. Maeve was brought back to PICU on a ventilator. Taylah was told by doctors that they didn’t expect Maeve to pull through after they removed the ventilator. Maeve is a little fighter and pulled through.
At Taylah’s insistence, a referral was sent to the craniofacial team at the Hospital. A CT scan uncovered that Maeve’s Lambdoid sutures had fused. The specialist explained that Maeve would require multiple surgeries for this rare occurrence. Maeve’s surgery for Lambdoid Craniosynostosis is scheduled for November 2024.
Mum Taylah explains: “With surgery approaching fast, it scares me what my 11 month-old daughter is going to go through. I just hope that this helps with all the symptoms she endures on a daily basis.”
You can keep up with Maeve any Taylah via their Instagram blog.
Thank you to Mauve's Mum Taylah for sharing
their story.
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