A MUM has shared the incredible journey that her son has been on with his rare condition which meant he was “born twice”.
Lisa Coffee, 23, explained how her son, Luca, underwent a rare surgery for spina bifida, where he was temporarily delivered from her womb and then placed back inside to continue the pregnancy.
CatersLuca, underwent a rare surgery for spina bifida before he was born[/caption]
CatersMum Lisa first learned about Luca’s spina bifida during her pregnancy[/caption]
Spina bifida is a birth defect where the spine and spinal cord don’t form properly.
It can lead to various complications, such as mobility issues.
The baby needed to be removed from Lisa’s stomach for a lifesaving surgery before he was placed back and finally born for the second time at 38 weeks.
She said: “Everyone is so happy and amazed that he’s able to do this. It has been an emotional journey for my family, but in such a positive way.
“I am so proud of how far he has come, and I’m incredibly grateful that the surgery has given him a chance to hopefully walk one day.”
Lisa, from Ebbsfleet Valley, Kent, UK, first learned about Luca’s spina bifida during her pregnancy.
At 27 weeks, doctors performed a rare foetal surgery where Luca was briefly taken out of her womb to repair the defect, before being placed back inside to finish developing.
Despite being born with the inability to walk, Luca defied the odds.
At just one year old, he’s making progress through his physiotherapy sessions, offering hope for his future.
After multiple surgeries, 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.
The mum was relieved to finally meet her son at 38 weeks and told how she was over the moon to be bringing him home after just eight days in the neonatal intensive care unit (NICU).
Lisa said: “I stayed in the NICU for about a week so they could monitor us, but it was worth it.
“The cerebellum is reversing itself and continues to improve.
“He has some fluid on his brain, but it has remained stable, so he hasn’t needed a shunt. 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.”
Despite being born with the inability to walk, Luca defied the odds.Caters
CatersAt just one-year-old, he’s making progress through his physiotherapy sessions, offering hope for his future[/caption]
CatersAfter multiple surgeries, Luca is left with just a scar on his back and a condition known as Chiari malformation[/caption]
Dr Hana Patel, NHS GP, says: “It is rare; only 1 in 1,000 pregnancies require this type of operation.
“It is a growing area of medicine that can save the life of a baby who has a malformation or disease.
“Spina bifida is a type of neural tube defect. The neural tube is the structure that eventually develops into the baby’s brain and spinal cord.
In Lisa’s case, the foetus needed surgery while she was pregnant with them.
What is spina bifida?
SPINA bifida is a type of neural tube defect.
It happens when a baby’s spine and spinal cord don’t develop properly in the womb, causing a gap in the spine.
Doctors believe it is either caused by genetic or nutritional factors (such as lack of folic acid) or where the neural tube which forms the baby’s brain and spinal cord is underdeveloped.
There are three types of spina bifida but myelomeningocele remains the rarest and most serious form of the condition.
One in every 1,000 pregnancies results in a spine or brain defect, such as spina bifida, and it is usually spotted around the 18-week scan.
The build-up of fluid in the brain can cause brain damage and result in learning disabilities, impaired speech and epilepsy.
Spina bifida can be treated with surgery
Foetal surgery means operating on a developing foetus while it’s still in your uterus (in utero). 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,” Dr Hana said.
“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 years. Spina bifida is a permanent, incurable condition.
“Although living with it is often difficult, many individuals can lead independent and fulfilling lives.”
One in every 1,000 pregnancies results in a spine or brain defect, such as spina bifidaCaters
CatersLisa is so grateful for how far her son has come[/caption]
CatersThe mum is incredibly grateful that the surgery has given him a chance to hopefully walk one day[/caption]