A baby born with an adult-sized head weighing more than 11lbs is battling a rare condition which has seen her undergo 40 major operations in her short life.
Lydia Rankin wasn’t expected to survive birth and her parents were warned that if she did her life expectancy would be just mere weeks.
But she proved to be a fighter and despite a life limiting condition, Lydia has turned four.
Her parents Ruth, 40, and Paul, 42, were told their unborn baby had a rare brain disorder at the 20-week scan and offered a termination, which they refused.
Her condition, Alobar holoprosencephaly, means the two front lobes in the brain failed to separate during development, which has left her unable to walk or talk.
She also has hydrocephalus, which is a build up of fluid that makes the head expand, picked up in the last few months of the pregnancy.
It resulted in Lydia being born with an adult-sized head, weighing 11lbs 2oz.
Since her birth in May 2011, she has had more than 40 operations on her head to release fluid from her brain – the first at just six weeks old.
Now four, she is still unable to move her arms and legs as the condition also means that no signals are transmitted from her brain.
Despite that, mum Ruth says she is still smiling and loves life.
The former dinner lady from Wigan, Greater Manchester said: “Doctors said she wouldn’t live past a couple of months but she’s now four.
“The surgeon has told us she made her own rule book.
“It has been a rollercoaster. We’ve been told three times in her life she was going to die but she’s a strong ox. She inspires all of us and her strength keeps us alive.
“She is our miracle.
“Paul is my rock and we are just living each day as it comes. From day one he said, ‘Ruth, I just know she is going to be with us for a long time.'”
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Ruth, also mother of Dylan Disley, 21, Faye, 15 and Joseph, 11, said: “The 20 week scan where we found out about the condition was just before Christmas. It was horrible.
“Since she was born, we’ve been constantly in and out of hospital with stays of two or three weeks every time she’s had an operation.
“With each operation, it doesn’t get easier. The anticipation is agonising. As a mother I can’t begin to tell you what it’s like.
“Last year she had eight operations in the space of three months.
“The surgeons at Royal Manchester Children’s Hospital , where Lydia receives care, have been amazing. We take our hats off to them.
“We are strong and Lydia loves life. She smiles all day long. She’s amazing.”
Both Ruth and her husband, a former baker, have given up their jobs to become Lydia’s joint full-time carers.
She now has a nasogastric tube in her head, which releases fluid and helps with the build up of pressure in her brain.
She is fed via a tube and must take six different types of medication three times a day.
For the past year Lydia, who has been described by her mum as a happy little girl who loves Frozen and Tangled, has also been suffering seizures, and has been diagnosed with epilepsy.
Ruth said: “She can have them in clusters, then not have any for a while. Some are so bad we’ve had to call an ambulance.
“Watching your child suffer is a parent’s worst nightmare.
“Every day Paul and I wake up with Lydia we think, ‘Yes!’ We might not get her to five years old, we might not get her to six, but we live for now and take each day as it comes.”
The family are fundraising for a standing frame for Lydia so she doesn’t have to sit in her wheelchair all day, a specialist system to straighten her head while she sleeps and a sensory area for her, complete with fibre optic lights.
All in all, the equipment will come to £3,500, so the family have set up a GoFundMe page called ‘Lydia’s specialised equipment’ to help with costs.
To donate towards equipment for Lydia, go to www.gofundme.com/9wcr6gc4 .