My baby was born twice: doctors took him out of my womb to operate on him, and then put him back
A Kent mum has told of her amazing birth story, which saw her son Luca born ‘twice’ – once when he was six months old and again when he was just under nine months old.
Lisa Coffee, 23, was told early in her pregnancy that Luca had developed the birth defect spina bifida, a condition that causes malformations of the spine and spinal cord.
Specialists decided to remove Luca from his mother’s womb at 27 weeks of pregnancy (six months) and perform surgery to repair part of the defect.
They then placed him back into her uterus and the pregnancy continued until Luca was born at 38 weeks gestation; just short of full term.
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, but his mobility can improve with physical therapy, doctors advise
After eight days in the NICU (Neonatal Intensive Care Unit), Mrs. Coffee was allowed to take her baby home.
However, the family was told that it was unlikely Luca would be able to walk again. The newborn also had to undergo multiple surgeries to repair damage to his brain and spine.
Luca is left with only a scar on his back and a condition known as Chiari malformation, in which part of the brain (the cerebellum) extends into the spinal canal.
Now he is making progress thanks to his physiotherapy sessions, which gives him hope for the future.
“The cerebellum continues to improve,” Mrs. Coffee said. “He has some fluid in his brain, but it has been stable, so he has not had to have a drain.
His next MRI scan won’t take place until he is two years old.
“He’s just the most amazing little boy and we couldn’t be more thankful for how far he’s come. I’m incredibly grateful that the surgery has given him the chance to hopefully walk one day.”
Research shows that around 600 babies are born with spina bifida in the UK each year.
Doctors removed Luca from Mrs. Coffee’s womb six months into her pregnancy
Some people with the mildest form of spina bifida, the occult form, may not even know they have it.
Around 600 babies are born with spina bifida each year in the UK, but only 1 in 1,000 are eligible for surgery similar to Luca’s.
This occurs when the spine and spinal cord do not develop normally during development.
During development, these structures—along with the brain—all arise from something called the neural tube. This tube is a precursor to the central nervous system and the protective tissues that form around it.
Normally, this tube forms and closes around the 28th week of pregnancy.
In babies with spina bifida, however, the opening does not close properly, for reasons scientists don’t fully understand.
Instead, these babies develop an opening in the vertebrae, allowing part of the spinal cord to slip, depending on the severity of the condition.
People with the mildest form of spina bifida, the occult form, often do not even know they have it.
The space between the vertebrae is so small that the spinal cord remains in place and they are unlikely to experience neurological or motor symptoms.
The most serious form of the condition is open spina bifida, or myelomeningocele, in which there are larger or multiple openings in the spinal column.
The newborn required multiple surgeries to repair damage to his brain and spinal cord.
The membranes, spinal nerves and tissues that protect them are torn from the baby at birth.
Symptoms vary widely depending on where and how severe the openings are.
Some children have skin problems, while others with severe forms cannot walk or move properly. They can also develop infections, such as meningitis, which can cause permanent brain damage.
If women get enough folic acid during pregnancy, it can contribute to the proper development of the spinal cord.
Typically, surgeons repair these defects after birth. However, in a small number of cases, the procedures can be performed while the baby is still in the womb.
Dr Hana Patel, a GP with the NHS, said of these remarkable operations:
‘It is rare; only 1 in 1,000 pregnancies requires this type of surgery.
‘In this case, the fetus needed surgery while the mother was pregnant with them. It is usually done to treat a life-threatening birth defect.
It is also done to repair spina bifida (myelomeningocele), improving the prognosis for children born with this condition.
“Many children with spina bifida survive into adulthood with proper treatment and care. The estimated average lifespan for a person with spina bifida is 40.
‘Although it is often difficult to live with, many people can live independent and fulfilling lives.’