Preston baby will need brain surgery four times before 16th birthday
Written by Skywave Radio News on July 17, 2020
A family in Preston have shared their experience of having a newborn diagnosed with meningitis.
Romany Hopkins will have to undergo brain surgery every four years before her sixteenth birthday after a devastating diagnosis.
Mum Demi Bamber, 25, had to rush Romany to hospital when she was just two days old, after which she was diagnosed with Strep B Bacterial meningitis.
At just five months old Romany underwent brain surgery to remove fluid on her brain, a procedure that will have to be repeated every four years if she has any hope of surviving.”
“It tore me apart when she was ill,” Demi told LancsLive.
“I thought everything was perfect. I can’t put into words what I was thinking, I was sure I was going to lose my daughter.
“I can remember all kinds of thoughts running through my head.
“All I can say is I’m happy that she is the way she is now, I never thought I would see her smiling.”
Demi, and her long term partner Brian Hopkins, 27, welcomed their fourth child, Romany, in July 2019.
Everything went well with the birth and Demi was able to return home with Romany the day after she was born.
Demi said: “Everything was perfect but then the next day Romany started screaming and it wasn’t a normal scream it was a hurtful scream.
“Then she went off her feeds for about 20 hours, she turned yellow and she started bringing up yellow bile.”
Romany was rushed back to Preston hospital and, at just two days old, was interred into the critical care unit.
Doctors feared that Romany had contracted meningitis and the newborn had to undergo a lumbar puncture before being placed on a course of antibiotics.
But it didn’t end there.
“We had to measure her head to see if there was a fluid build up in her brain,” said Demi.
“That is a symptom of meningitis. It grew a centimetre in just two weeks.”
Romany had Strep B Bacterial meningitis which was causing hydrocephalus, fluid build up deep in the brain which can put pressure on the organ.
The newborn had already suffered brain damage and had to undergo surgery in December 2019 for a shunt to be be fitted.
Although the surgery went well Demi says the meningitis could still prove to have a long term impact on Romany’s health.
The 25-year-old said: “We went for an MRI scan last month and the doctors are concerned because the scar on her brain is stretching.
“We don’t know how much it has already effected her development, she is one and isn’t crawling yet.
“But she is doing well, the shunt seems to be working and she is happy.
“She’s a bubbly, cute little baby, nothing is going to get her down. To look at her you wouldn’t think she had been through all this.”
Romany maybe ok now but she will need brain surgery every four years until her 16th birthday to replace the shunt.
Thereafter she will require a procedure every 10 years.
Demi is keen to remind mothers that they should ask for a meningitis test during pregnancy.
“You can get one at 35 weeks,” said Demi.
“It is not uncommon for pregnant women to carry Strep B meningitis and it can be passed onto the baby.
“We want people to be aware so they don’t have to go through what we went through.”
Family friend, Kev Webster, 49, first met Romany through his work at the Top Café in Kirkham.
The café give free breakfasts and meals to those in need and it was through this that he met Demi and Brian with their baby Romany.
“They’re a brilliant family, they really are lovely,” Kev told LancsLive.
“She’s a lovely little girl, we all go through tough times but it all seems quite insignificant in comparison to what she is going through.”
Kev decided to fundraise in support of Romany and her family.
He had pledged to complete 1,000 press ups and 1,000 burpees on his 50th birthday (July 25) to raise £1,500 for Romany’s family.
The 49-year-old said: “It would be nice to turn around and give that family some money so they can go away somewhere or have a break.”
If you want to support Kev’s project then you can donate to his GoFundMe page.
He is currently training for his 50th birthday.