A mum realised there was something seriously wrong with her baby due to her unusual shaped head. Molly Wardle-Hampton was just 12-weeks old when she needed emergency surgery to remove a huge brain tumour after her mother Corinne Wardle spotted some changes in her baby's head.
Corinne, 38, a nurse from Flint noticed a range of symptoms such as a bigger head than usual for her age, seizures and a fixed eye gaze but says she was consistently told by medical professionals there was nothing wrong with her daughter. It was only after she spotted bulging lumps in Molly's fontanel (the soft spot of a baby's head) was she rushed in for an emergency scan and the family given the horrific diagnosis.
The scan showed that a tumour covered nearly the whole right side of the 12-week-old baby's brain and she was rushed into emergency brain surgery to remove it, taking over ten hours.
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Corinne had first started noticing the symptoms weeks earlier and is now working with the charity Brain Tumour Research to raise awareness and encourage other parents to know the tell take signs.
She said: "When she was three weeks old she started having seizures, she had three seizures in total so I took her to the GP and had a referral to paediatric outpatients. We went to the outpatients appointment and told them everything about how she had had these seizures, how she would only ever look right, she wouldn’t look left, and the vomiting and the size of her head.
"The registrar told us that they weren’t seizures because her arms and legs weren’t flailing, that her eyes would fix, the vomiting was reflux and that her head was only marginally bigger and sort of sent us on our way. Not long after we noticed that her fontanel , the soft part at the top of her head was bulging and that she had had sudden increase in the side of her head and her eyes had started going in opposite directions."
The family were initially told it wasn't an emergency and to visit the GP in the morning but by the stroke of luck a paediatric doctor was visiting another patient in the hospital and said he would have a look. The family were then given the devastating diagnosis and Molly rushed into surgery.
"The doctors were absolutely amazing, took one look at her and rushed her in. They measured her head and it was off the scale and the fontanel was bulging so they rushed her in to CT and got us an urgent report within 15 to 20 minutes and told us there was a very large mass on the brain.
"They weren’t sure if she was going to last the night because as well as she mass she had hydrocephalus (fluid on the brain) which was the pressure moving her eyes. They had consultants coming in overnight constantly checking on her. We got her in and she lasted around ten hours in surgery.
"The surgeon was amazing. He said he had taken away as much of the tumour as he could see. She had to have the full body of blood replaced with transfusions during the surgery." Molly then spent days in the ICU while her body recovered from the traumatic surgery."
Corinne said the day of operation was "horrendous" and she spent hours fearing for the worst. She said: "It was horrendous. I knew there was something but we never expected it to be a mass and even then never even considered it to be cancer. When we kept getting sent home I thought I was going mad."
"You’re just doing anything to keep yourself busy. It was the longest day. You’re just constantly visualising what you see on TV isn’t it ‘I’m sorry but there was nothing we could do, we tried what we could’ that sentence goes through your head constantly."
Fortunately after the surgery in Alder Hay hospital in Liverpool nearly all of the tumour was removed. Corinne says Molly was a "different baby" afterwards. "For the first time in her life, Molly laid on her back, staring out of the window, babbling. I was overcome with emotion as for the last three months she couldn’t be put down. It was amazing to see. Especially after being told, had we waited any longer, that would have likely been the last day of her life.," she said.
Happily, MRI scan results on 3 January 2023 came back clear, with no further growth of Molly’s tumour. However, treatment has left Molly with life-changing injuries and she now needs hearing aids. After a round of chemotherapy as part of a clinical trial Molly finally rung the bell in January.
While she is slowly on the mend, because of her struggles in the first few months of her life, Molly, now 14 months old, has developed at slightly a slower pace than other children her age. Corinne said: "She finished her last chemo a few weeks ago and rang the bell last week. She’s got permanent hearing loss but luckily it’s only mild to moderate.
"The chemo can make her infertile but we won’t know that until she is older. There was a risk her liver and kidneys were affected but at the moment they look ok. The trial she was on there was supposed to be seven cycles with four different courses and for each course there were two chemos but she took it quite well.
"She’s doing really well, she is a bit delayed. She’s essentially grown up in hospital beds because we spent so much of last year in hospital. When she sits down she sits like she is in a mid crunch which has stopped her developing but now she’s just starting to stand with assistance. She’s 14 months now but is still in 6-9 months clothes, she’s just starting to eat properly now. She’s never really eaten food, she's just not been interested."
Corinne has worked at the Countess of Chester Hospital for five years and has two other children Leah, 12 and Kacey, 11. She is campaigning with the charity Brain Tumour Research to raise awareness and support their mission to increase the UK investment in research into the disease.
She said: "I’m a nurse and I kept getting knocked back from everyone telling me it was fine, I work in urgent care and I know what a seizure is and I was being told ‘no it’s not’. When I went to the outpatient appointment I went in with six textbook symptoms of a brain tumour.
"I did keep pushing but by the end even I thought I was going crazy. So If I think that and have a lot of medical knowledge, for the general parent who doesn’t have that and trusts in everyone then they would just take the advice and it is scary. You know your child best ultimately.
"Even though things can be seen as rare, they still should be investigated. This could have been caught when she was seven or eight weeks old if she had just been sent for a CT scan.
“According to Molly’s oncologist, this cancer can be cured but the evidence is minimal. Her specific cancer – ependymoma - has subtypes that have very different outcomes and behave differently. However, this discovery is recent, meaning evidence and research is minimal. So whilst we have been assured that Molly's outcome is bright, it highlights there is a need for further research into brain tumours.
“From the evidence I have studied, this terrifies me. Molly will likely have MRI scans for the rest of her life as there is a possibility of the tumour returning. Despite the risks and uncertainty, she still has a chance and that offers me some respite. She’s recently learned to say ‘Mama’ which makes me smile every time I hear it.”
Mel Tiley, community development manager Brain Tumour Research, said: “We’re grateful to Corinne for sharing Molly’s story and wish the family well as Molly nears the end of her treatment. Unfortunately Molly’s story is a reminder that brain tumours are indiscriminate and can affect anyone at any age. With the support of people like Corinne we aim to change the shocking stats around the disease. It’s only by working together that we will be able to improve treatment options for patients and, ultimately, find a cure.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.
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