AS an excited mum-to-be, Lauren Wark was counting down the days until she could hold her baby in her arms for the first time.
The new arrival would be an extra special gift for the Linwood woman and her husband Gordon, after three other pregnancies during the previous three years had ended in miscarriage.
However, their world was turned upside down again when their unborn son was diagnosed with spina bifida.
Doctors told the couple their baby could be paralysed from the waist down and suffer other life-limiting conditions.
Fast forward 17 months, however, and baby Phoenix is now healthy, happy and developing well.
This follows “life-changing” fetal surgery pursued by Lauren, who is now keen to raise awareness of the help available to others who encounter similar problems.
She admits it was a terrifying experience in August last year when hospital staff first raised the alarm during her 20-week scan.
Lauren, 27, told The Gazette: “They couldn’t see Phoenix’s cerebellum at the back of his head and weren’t sure what was going on.
“We were told to see a specialist at the maternity unit in the Queen Elizabeth University Hospital (QEUH) in Glasgow, who confirmed that Phoenix had spina bifida.
“Then we were told that a lot of people who get this diagnosis choose to terminate the pregnancy.
“I said that was not going to be an option for me because, at the end of the day, my son’s heart was still beating inside me and that’s all mattered.
“We had tried really hard to have Phoenix, as we’d lost three babies before him. We were not going to terminate the pregnancy.”
Spina bifida is when a baby’s spine and spinal cord does not develop properly in the womb, causing a gap.
There is no cure and, without surgery, it can lead to paralysis, as well as bowel, bladder and kidney problems.
Lauren and Gordon went online to search for treatments that might be available for their son and soon discovered there was a cutting-edge procedure which involved babies undergoing surgery while still in the womb.
However, the procedure is so specialised that it is currently only available through NHS England at fetal surgery centres in London and Leuven, in Belgium.
The couple were nevertheless set on Phoenix receiving this treatment, as operating on a baby between 23 and 26 weeks of pregnancy, instead of after birth, usually results in a much better outcome.
Lauren said: “The doctors said it was high risk and that, if something went wrong during the surgery, they would focus on saving me rather than the baby.
“Many tests had to be done, such as the amniocentesis to find out if there was any other issues with Phoenix. I also had to have tests to find out if I could go ahead with having such surgery.”
Lauren was relieved to be told she could have the surgery at University Hospitals Leuven but she was now very close to passing the 23 to 26-week window required for the procedure.
Within days of being given the go-ahead, the couple flew to Amsterdam and then travelled by train to Leuven.
On September 8 last year, mum and son went under the knife together for a procedure lasting four and a half hours.
Under the supervision of consultant fetal surgeon Professor Jan Deprest, a team of around 30 staff were in the operating theatre, including neurosurgeons, anaesthesiologists, radiologists and neonatologists, in case the baby needed to be delivered.
Operating inside Lauren’s uterus while she was under anaesthesia, nerves in Phoenix’s back were repositioned and a large lesion was closed.
As the lesion on the unborn baby’s lower back was very wide and there was not enough skin to close it back over, a silicone patch was applied as a skin substitute.
Thankfully, the surgery was a success and Lauren was able to fly home nine days later.
The former St Benedict’s High pupil said: “It had been absolutely terrifying and there was a lot to process. I was excited to have my son but also scared about what was going to happen when he was born.”
After resting at home for several weeks to avoid premature rupture of the membranes, Lauren’s water broke and she was rushed to the QEUH. However, she did not go into labour.
The nursery teacher would spend another two weeks in hospital before Phoenix was born by Caesarean section on November 1, 2020, at exactly 33 weeks of pregnancy.
The silicone patch that had been applied to his back during the fetal surgery was successfully removed following his birth and the wound quickly healed.
However, a month later, he was back in hospital after he temporarily stopped breathing while being fed.
Doctors diagnosed the problem as hydrocephalus, where a build up of fluid puts pressure on the brain.
Phoenix underwent an endoscopic third ventriculostomy, where a hole is made in the floor of the brain to allow the trapped fluid to escape.
Lauren said: “Phoenix is doing exceptionally well. He has got fantastic leg and feet movement, has started trying to crawl and is a very happy baby.
“I think there needs to be more awareness about this fetal surgery, as there are still so many women who don’t know about it and are now too far gone for it.
“We are really thankful to the doctors who did this magical, life-changing surgery.”
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