AFTER six months struggling to cope with learning her daughter has a rare condition, which means she has an asymmetrical head, Westbury mum Rebecca Meddick wants to raise awareness among other parents.

September is unicoronal craniosynostosis awareness month and Rebecca, who gave birth to her daughter, Aida Willow Murden-Beaty, during lockdown, felt now was the time to tell her family’s story.

Rebecca said that she knew right away that something was not quite right, but this was put down to Aida being a breech birth, when she arrived after an emergency caesarean on March 7.

A few weeks later her head shape had not improved and Aida was hospitalised with a rash - but left with the diagnosis of unicoronal craniosynostosis, and the news she would need surgery to correct it as she grows.

“I brought up her head and how it wasn’t any better,” she said. “Normally they would have sent me home and rescheduled the CT scan for a later date but because they were quiet, they said they would do it now and within a week we had the results back.”

A few anxious weeks after the diagnosis, Aida began started having seizures.

“Looking back now I realise she probably had a few before but her first major seizure was June 26 when she was rushed into hospital.

“They had to save her life and I honestly thought that was going to be the end.”

The drama was even more stressful as Aida's dad, Jack Murden-Beaty, was not allowed in the hospital due to coronavirus rules.

“That was until midnight on June 26 when they said ‘I think you need to bring your partner in because we’re not sure what’s going to happen’,” Rebecca said.

Doctors had thought that the seizures were caused by epilepsy, However, tests came back clear and they are now awaiting test results to determine the cause, and to learn when Aida will have surgery.

Rebecca hopes to have the results by October 6. In the meantime, Aida has been given medicine that has alleviated her seizures.

Rebecca said the experience has been hard on the family because of lockdown and admits that she has been depressed, anxious and constantly worried.

“She has a heartbeat tracer with her all the time because if she’s in the back of the car, I can’t see her and if she’s in bed at night I need to know she’s not stopped breathing again,” Rebecca admitted.

“My son was there when she had her first big seizure, so it's affected him and he’s always asking if she’s going to be alright.

“At first it was hard because when you have a baby, you don’t want to admit there’s something wrong because to me she’s beautiful but I knew she wasn’t quite how she’s supposed to be.”

Rebecca has made an Instagram page (@aida.willow) which updates followers on Aida’s journey, to help others going through similar experiences and to raise awareness of the condition.

“It has helped me massively. I’ve had people from America, Italy, France, everywhere messaging me with their stories and encouragement.

“I don’t have to worry now with people thinking ‘does she know her baby’s not quite symmetrical?’ because everyone knows.”

She said while experiences are different between parents, there is one common thread – that the parents all knew something was not quite right and it was them who pushed to address it.

“Even if it's not Aida’s condition, no matter what’s wrong it doesn’t change your love for your child.”

“If anything, it makes you stronger as a person and as a family.”