December 6 2013 Latest news:
Saturday, October 5, 2013
Her loving parents were told she would probably not survive pregnancy and if they were lucky she would live for a couple of days.
But, as she gets ready to celebrate her second birthday, miraculous Maya Ratcliffe continues to defy doctors’ predictions.
Maya, of Drybread Road, Whittlesey, was born five weeks premature with spinal damage and a swollen brain on October 12 2011.
Her parents Fay Dovey and Aaron Ratcliffe did not get to see her until she was stable in neonatal intensive care 14 hours after her arrival.
In the first three months following her birth she had five operations and contracted meningitis, which left her fighting for her life.
The swelling on her brain has done permanent damage and she has suffered 27 seizures, which have stopped her breathing on several occasions.
But her condition is improving - the last four months have been free of seizures.
And she now has a baby brother to play with. The couple’s second child, Max, was born 10 weeks ago.
Now Maya’s family is preparing to celebrate her birthday by taking part in the Perkins Great Eastern Run in Peterborough on October 13 to raise money and awareness for SHINE, a charity which has supported them every step of the way.
Spina bifida is a fault in the development of the spine and spinal cord, which leaves a gap in the spine.
It is caused when the spinal column, the bone which surrounds and protects the nerves, does not fully close during pregnancy.
There are numerous types of spina bifida, but the most serious is called myelomeningocele. The spinal column remains open and the spinal cord pushes out to create a sac in the baby’s back, leaving it vulnerable to infections.
In most cases, surgery can be carried out to close the defect. However, damage to the nervous system will usually already have taken place.
Most babies with myelomeningocele also develop hydrocephalus.
Miss Dovey said: “They have given us support, information and advice when things have been tough and have smiled and laughed with us through the good times.
“Without SHINE Maya’s journey may never have begun.
“We also have them to thank for the birth of our healthy son.
“All the odds were stacked against us having a healthy baby but with the support from SHINE to us personally and the support they give healthcare professionals into research studies for Spina Bifida and Hydrocephalus he was possible.
Hydrocephalus is a build-up of the cerebrospinal fluid, the fluid that surrounds the brain and spinal cord, in the skull that leads to brain swelling.
The fluid normally moves through the brain and the spinal cord and is soaked into the bloodstream.
However, levels in the brain can rise if the flow of fluid is blocked, if it does not get absorbed into the blood properly or if your brain makes too much of it.
Children may be born with hydrocephalus – it can occur with other birth defects of the spinal column or brain. It can cause brain damage.
Surgery is usually carried out as soon as hydrocephalus is diagnosed. A flexible tube called a ventriculoperitoneal shunt, or VP shunt, may be placed in the brain to re-route the flow of the fluid.
The shunt sends the fluid to another part of the body, such as the belly area, where it can be absorbed.
“We are also raising money for Peterborough General Hospital and Addenbrooke’s Hospital children’s departments to say a big thank you for all they have done for us as a family.
“We have received exceptional care from both as well as the ambulance service and A & E departments and without them our beautiful girl would not be here.”
Miss Dovey and Mr Ratcliffe were overjoyed when they found out in June 2011 that, after almost a year of trying, they were to become parents.
But their world would turn outside down at the first baby scan.
Miss Dovey said: “We were so excited and couldn’t wait for our first baby scan. This day also became the day we first heard the words Spina Bifida and Hydrocephalus.
“We were told our daughter would probably not survive the pregnancy and if she did would probably only survive a matter of hours and if we were lucky a day or two.
“After much thought we continued on with our pregnancy and on October 12 our baby girl was born screaming and kicking her legs just like many other babies.
“The difference was Maya had what looked like a large blister on her back which contained her spinal nerves and fluid because her spine had not developed properly in the early stages of pregnancy.
“She also had a very large swollen head caused by a build of brain fluid because of a blockage at the back of her neck.”
Maya underwent two major surgeries lasting almost 10 hours in the first few weeks of her life to close her back up and insert a VP Shunt to regulate and drain the fluid from her brain into her tummy.
The surgeries went well and after a month in Neonatal Intensive Care Maya came home with her parents.
But Maya’s stay at home would only last five days as she became very sick.
She was taken to the doctors and then went to see a paediatrician, who transferred her to intensive care.
Maya had meningitis and was fighting for her life.
She was rushed to theatre for the third time and emergency procedures were carried out to enable life saving drugs to be inserted into her chest. She was then placed in an incubator and given an intensive course of antibiotics.
Miss Dovey said: “We didn’t leave her side for two weeks. Day and night we watched while she fought the biggest battle of her tiny life.
“Things started to slowly get better and she started to recover.”
But, because her VP shunt was removed the fluid on her brain started to build up and her head started to swell again, so Maya had a life-saving external drain fitted to help regulate the fluid in order for her brain to not become damaged further and potentially stop her from breathing.
The brave baby underwent her fourth surgery at six-weeks-old and remained in hospital for a further two weeks.
She had her fifth operation in December and was discharged from hospital in time for Christmas.
Since then their have been countless seizures but in the past four months Maya has shown signs of improvement.
Miss Dovey said: “We have a smiling, happy, chatty, independent girl who is full of life and a real character.
“She has been seizure free for four months and is amazing all her doctors, nurses and healthcare professionals.
“Every day she amazes us and achieves something. They may not be the average child milestones but they are Maya’s missions.
“Maya attends full time regular nursery because we both work to support our children.
“We believe Maya is doing so well due the love and support of our family and friends and the dedication and commitment of all the staff at Alphabet Day Nursery”
And she thinks the people of Whittlesey and her support team have played a crucial part.
She added: “I would particularly single out Karen, her key worker, and Kerry the special educational needs co-ordinator, who have so much passion and enthusiasm which drives not only Maya but all the children to achieve their potentials in a happy caring environment.”
You can find out more about Maya’s journey at http://mayaswonderland.weebly.com/ or make a donation at https://www.justgiving.com/hungrycaterpillars