A Kent mother has told of her astonishing birth story, which saw her son Luca ‘born twice’ — once at six months and again and just under nine months.
Lisa Coffee, 23, was told early on in her pregnancy that Luca had developed the birth defect spina bifida, which causes malformation of the spine and spinal cord.
Specialists opted to remove Luca from his mother’s womb at 27 weeks — six months — and perform an operation to repair some of the defect.
They then placed him back into her uterus, and the pregnancy continued until Luca was born at 38 weeks; just shy of a full-term pregnancy.
One year-old Luca Coffee was born ‘twice’ as part of an astonishing medical procedure to repair damage caused by spina bifida
Luca will not be able to walk, however his mobility may improve with physiotherapy, doctors advise
After eight days in the NICU (Neonatal Intensive Care unit), Ms Coffee was able to bring her baby home.
However, the family were told it is unlikely Luca will be able to walk. The newborn also had to undergo multiple surgeries to repair damage to his brain and spine.
Luca is left with just a scar on his back and a condition known as Chiari malformation, where part of the brain (the cerebellum) extends into the spinal canal.
Now one, he’s making progress through his physiotherapy sessions, offering hope for his future.
‘The cerebellum continues to improve,’ said Ms Coffee. ‘He has some fluid on his brain, but it has remained stable, so he hasn’t needed a drain fitted.
‘His next MRI won’t be until he’s two years old.
‘He just the most amazing little boy and we couldn’t be more grateful for how far he has come. I’m incredibly grateful that the surgery has given him a chance to hopefully walk one day.’
Roughly 600 babies are born with spina bifida in the UK every year, according to studies.
Doctors removed Luca from Ms Coffee’s womb six months into her pregnancy
Some with the mildest form of spina bifida – the occulta form – may not even know they have it.
Roughly 600 babies are born with spina bifida every year in the UK, but just 1 in 1000 will be considered for operations similar to the one performed on Luca
It happens when, during development, the spine and spinal cord do not form normally.
During development these structures – along with the brain – all arise out of something called a neural tube, a precursor the central nervous system as well as the protective tissues that form around them.
Typically, this tube forms and closes by the 28th week of pregnancy.
But in babies with spina bifida, it doesn’t close properly, for reasons that are not entirely clear yet to scientists.
Instead, these babies are left with a gap in the vertebrae, through which part of the spinal cord may slip, depending the severity.
People with the mildest form of spina bifida – the occulta form – may not even know they have it.
The gap between their vertebrae is so small that the spinal cord stays in place and they are unlikely to experience any kind of neurological or motor symptoms.
The most severe form of the condition is open spina bifida, or myelomeningocele, where there are larger or multiple openings along the spine.
The newborn had to undergo multiple surgeries to repair damage to his brain and spine.
The membranes, spinal nerves and tissues they’re meant to protect are pulled outside the baby at birth.
The symptoms vary wildly based on where and how severe these openings are.
Some children may develop little more than skin problems, while other with severe forms may be unable to walk or move properly, or develop infections like meningitis that can leave them with permanent brain damage.
Making sure women get plenty of folic acid in pregnancy can help ensure the spinal cord develops properly.
Typically, surgeons repair these defects after birth. However, in a small number of cases, procedures can be performed while a baby is still in the womb.
Speaking of these remarkable operations, Dr Hana Patel, an NHS GP, said:
‘It is rare; only 1 in 1,000 pregnancies require this type of operation.
‘In this case, the foetus needed surgery while the mother was pregnant with them. It’s usually done to treat a life-threatening birth defect.
It’s also done to repair spina bifida (myelomeningocele), improving outcomes for children born with the condition.
‘Many children with spina bifida live into adulthood with the proper treatment and care. The estimated mean age for a person with spina bifida is 40.
‘Although living with it is often difficult, many individuals can lead independent and fulfilling lives.’
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