A Darlington couple have described their devastation at learning their precious newborn baby daughter had a rare cranial condition - and how she now spreads joy despite countless surgeries.
Five-year-old Ophelia was diagnosed with craniosynostosis, where two or more plates of the skull prematurely fuse to each other, usually before birth.
Mum Abbi Woodley, 33, said: “Despite all the challenges Ophelia has faced and is yet to face, she doesn’t let anything stop her, she amazes us with her resilience.
“She has just finished reception at school and has exceeded all expectations. She has made a lovely group of friends and loves school.
“She has such an infectious smile, a cracking sense of humour and she spreads joy wherever she goes. We are so immensely proud of her.”
The family is holding a fun day at the Red Hall Community Centre from 11am to 3pm today (Friday, July 26) to raise awareness of the condition and cash for Headlines Craniofacial Support - the leading UK charity supporting people and their families with craniosynostosis and other rare craniofacial conditions.
Abbi, who met her husband Steven, when they were teenagers and married in 2017, said: "Soon after I fell pregnant with our first child, both 12 and 20 week scans were as they should and we were very excited for our new arrival.
“A growth scan late on during pregnancy detected a ‘lemon-shaped ‘ skull and we were referred to Foetal Medicine at the RVI.
“We were reassured that we were having a healthy baby and to go away and enjoy the rest of our pregnancy.
A few weeks later, her waters broke and Ophelia was born more than four weeks early, in March 2019.
Abbi said: “We knew from the moment Ophelia was born that something was different about her.
“Soon after her birth, her oxygen levels dropped and she was moved to the Special Care Baby Unit (SCBU) where she was put in an incubator to help her breathe.
“Once she was able to breathe independently, Ophelia underwent various tests, x-rays and CT scans. She also failed her newborn hearing screen.
“The doctors liaised closely with both the RVI and Alder Hey Children’s Hospital in Liverpool. The scans showed that Ophelia's skull was fused - a condition called craniosynostosis."
Ophelia was taken to the nearest Craniofacial centre which is Alder Hey in Liverpool, where she underwent further tests and was diagnosed with Pfeiffer Syndrome, a syndromic form of craniosynostosis.
Children with Pfeiffer syndrome have a characteristic appearance due to the skull plates fusing too early, including a shallow mid-face and eye sockets, resulting in prominent eyes (proptosis) and an underdeveloped upper jaw.
Their airway may be narrower than usual leading to breathing problems. Hearing loss and dental problems are also common.
Abbi said: “We were told that Ophelia would need major cranial surgeries until she reached adulthood, that she may need breathing support as she grew and may or may not go on to have learning difficulties.
"It was a very difficult time for us, our world was turned upside down. We had this precious newborn baby girl and all the ideas we had of parenthood had been pulled from beneath us. Instead we were fraught with worry over Ophelia’s future and the imminent surgery she faced."
The couple contacted Headlines for information, which proved invaluable for the family coming to terms with the diagnosis and what that meant for the future. There is a stigma attached to the condition because of the physical appearance, which Headlines does much to raise awareness of and dispel.
Ophelia underwent her first cranial surgery at Alder Hey at just 10 weeks old to release the sutures in her skull, to allow her brain to grow.
She developed severe obstructive sleep apnoea and has needed to use CPAP since she was seven months old.
Ophelia also developed hydrocephalus (fluid on the brain) and required a shunt when she was eight months old.
At 10 months, Ophelia needed a Fronto-Orbital Advancement surgery to create more room for her brain and to protect her eyes.
Unfortunately, Ophelia developed sepsis following this surgery and the family spent over six weeks in Alder Hey due to various complications and needing further treatment.
They made it home just in time for Ophelia’s first birthday before the pandemic hit and they had to shield.
Ophelia has undergone countless more cranial and various other surgeries (along with complications) since.
Last year Ophelia underwent a Fronto Orbital advancement for the second time.
Abbi said: "This time I was pregnant with our second child. Thankfully after three weeks we managed to go home where shortly after, our little boy Barney safely arrived, completing our family."
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On Friday, July 26 a family fun dayis being held to raise money for Headlines Craniofacial Support.
- The family fun day at Red Hall Community Centre, between 11am - 3pm, will feature a bouncy castle, face painter, craft stall, cake stall, hot dogs, bottle stall, tombola and more. There is a raffle with prizes which will be drawn on the day at 2pm. Huge thank you to all the local business who have supported us.
Ophelia's Dad Steven is also running the Great North Run in September for the third time, this year to raise money for Headlines Craniofacial Support.
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