'We are hopeful for our daughter's future': Leyland parents raise awareness after baby diagnosed with debilitating spinal condition
When Leyland parents Sam and Joanne found a lump on their newborn daughter's back in January, they were handed the news that she had Spina Bifida. Now, the couple are hoping to raise awareness about the debilitating spinal disease.
When little baby Olivia was born to the Leyland couple at Royal Preston Hospital in January, it was the happiest day of their lives together.
But just a few hours after giving birth, mum Joanne Wilkinson noticed a lump on her daughter's back which began raising concerns for doctors and nurses at the hospital.
It was after a series of tests and ultrasounds that the new parents were handed the news that her spinal cord had fallen into a sack on her back.
It was confirmed by an MRI scan just three days later that the newborn had Spina Bifida.
It was a moment that mum Joanne, 28, described as "confusing and horrific" for the couple, as their daughter, who is now seven months old, continues to undergo a range of tests and treatments to determine how the condition will affect her life.
But she added they are remaining optimistic about Olivia's future and are eager to share information to raise awareness about the condition.
Mum-of-two Joanne, who co-owns Fat Sam's Bar and Grill with partner Sam Howarth, said: "When we first found the lump and were told the news by doctors at the hospital, we didn't know anything about what it was or what it meant.
"Throughout the pregnancy we had no idea that she had this condition and nothing was picked up on scans. It was only when I took her up the ward after giving birth and went to feed her that I noticed the large lump on her back.
"We just couldn't believe it, it was something we knew nothing about. You never think something like this would happen to you or your family until it does and the next minute it is just life changing."
Sam and Joanne spent weeks researching the condition and have since been receiving continuous support and guidance from the Shine charity, which provides specialist advice and support for people suffering with spina bifida and hydrocephalus.
Spina bifida is when a baby's spinal cord does not develop properly in the womb, causing a gap in the spine and can lead to weakness or paralysis of the legs, bowel incontinence and a lack of skin sensation.
The past year had already been challenging for the couple, who were repeatedly forced to close their popular restaurant business on Towngate, Leyland due to the lockdown restrictions.
And when she was eight weeks old, they were also informed that her hip had been severely dislocated from her birth, meaning she would need to undergo a major operation and spend six months in a full body cast whilst she heals.
Her operation was forced to be put on hold in April after the newborn contracted Covid-19 with parents Sam and Joanne also testing positive.
But the couple have said the temporary closure of their business has meant they have been able to spend vital time with their daughter, frequently taking her to Alder Hey Children's Hospital for check-ups on the condition.
The outcome of her major hip operation, due to take place on July 22, will determine whether little Olivia will ever be able to walk unaided as she grows up.
Mum Joanne said: "It really feels like it's been one thing after another but we are trying so hard to keep positive. All throughout her life there will be constant obstacles for her such as her walking, she may be incontinent, her foot may never move or bring back feeling again and her hip surgery may not work.
"This would mean her bone would melt away and her spinal cord may tether again, plus much more. Last week, at yet another appointment, we were told that Olivia’s bladder is only functioning at 50 per cent. We have many more test yet and we are just praying for some good news.
"This year has been horrific with everything going on, but it has also been a blessing to spend that time with our daughter. We don't want to leave Olivia at a nursery, we want to be able to check up on her all day.
"To look at her you wouldn't know anything is wrong with her. She is such a happy and bubbly child. People can't believe it when you tell them what conditions she has."
Little Olivia needs to sleep on padded pillows and complete daily physio in a bid to bring some nerve feeling back into her right foot.
To raise awareness and say thank you to the efforts of the Shine charity, parents Sam and Joanne organised a fundraising event and raffle at their Leyland restaurant on June 25, where more than £3,000 has so far been counted and donated.
Looking to the future, 7-month-old Olivia will spend up to the next six months in a spica cast as she heals from her hip operation and will continue taking a course of medication to aid her with her bowel problems. It is a condition which the Leyland couple want to raise as much awareness of as possible.
Mum Joanne added: "We have stayed strong so far, and joining Facebook groups and keeping in touch with Shine charity has just been amazing. We have found so much more information about it than we knew at the start - it is a condition where everyone is affected differently.
"Even after her operation, it could cut off blood supply to the bone in the leg or could re dislocate itself but we are very optimistic. We hope everything works out, but we are going into everything thinking we will get the worst outcome so that if we don't, it will be even more amazing.
"Alder Hey have also been great with us by keeping in touch and doing check ups and they are always there when we need someone to talk to, because it is very difficult when you are going through something unexpected that you know nothing about. I have so many questions and they are always helpful because we want to know everything we can about her condition.
"We just want to raise awareness about the condition and give hope to other parents, because if we had known more about it when she was born then this could have been a lot easier for us."
Find out more about the condition and the work of the Shine charity HERE.
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