Her name, perfectly chosen by her venerable parents, is the abbreviation for the Spanish word for miracle.
And little Mila is extraordinary indeed.
For this blue-eyed girl happily in her mother’s arms, this is amazing evidence of the powers of modern medicine as one of only a few dozen babies in the world to undergo groundbreaking spinal surgery while still in the womb.
The complicated NHS surgery performed by a team of 30 when Mila’s mother, Helena Purcell was only 23 weeks pregnant, saved her from lifelong paralysis and incontinence caused by the debilitating condition of spina bifida.
The six-week-old is doing well today, and there are few signs of the condition that threatened to overshadow her future.
The complicated NHS surgery performed by a team of 30 when Mila’s mother, Helena Purcell was only 23 weeks pregnant, saved her from lifelong paralysis and incontinence caused by the debilitating condition of spina bifida
“I feel such a joy that Mila is finally here and so healthy after everything we’ve been through,” 41-year-old Helena told The Mail last night.
“The NHS medics are heroes to me, and the operation they have performed is just amazing. Without them, Mila would be paralyzed. I’m just so grateful that she had this chance. ‘
Mila is all the more valuable to Helena and her husband Ian, 46, as their struggle to enter the world began long before the operation.
The couple from Hornchurch, Essex, who already have a three-year-old son, Luca, went through seven rounds of IVF at a cost of more than £ 30,000 to have their longed-for second child.
It was a protracted and emotionally difficult ordeal that made Helena, a language teacher, all the more determined that this pregnancy – with one of her last remaining eggs – would be a success.
She diligently took her recommended daily allowance of folic acid, a supplement that is essential for normal development and can protect against spina bifida.
But on November 22 last year, when Helena went to Queen’s Hospital in Romford for her 20-week scan, which checks for abnormalities, the sonographer paused after going through the vital organs checklist.
“I knew something was wrong,” remembers Helena. “I asked if everything was okay and she said,” Give me a moment – I need to see. “‘
Then came the kind of news every parent-to-be fears. The sonographer gently told the couple that their baby had spina bifida.
The debilitating condition, which affects about 1 in 1,000 babies born in the UK each year, is due to a problem with the neural tube – the structure that eventually develops into the baby’s brain and spinal cord.
Some of the tube does not close properly, causing nerve damage that can lead to paralysis in the legs, incontinence, and in some cases, brain damage.
What the sonographers told Helena and Ian based on the scan was devastating. “There was a large lesion on her spine – it was half open and the nerves were pushed out,” says Helena. “I couldn’t stop crying. I was torn to pieces. We had examined it when I was pregnant with Luca and we knew it would have a big impact on her life. ‘
The effects are so life-changing for both the child and their families that around 80 percent of mothers choose to have an abortion.
But there was never a doubt for Helena that she would keep her little girl.
“I couldn’t quit because of what I had been through with IVF. She was already a miracle baby. ‘
The doctors gently explained their options. If spina bifida is detected, surgery to close the spine can be done shortly after a baby is born. However, this is usually too late.
But Helena and Ian were given another option: a new, groundbreaking operation on their young daughter while she was still in the womb.
This has been going on on the NHS since early 2020, after it was developed in the US, and includes teams of highly qualified doctors specially trained for the procedure.
It would mean cutting open Helena’s uterus to give the doctors access to Mila. The amniotic fluid surrounding the baby would be drained to allow the delicate surgery to take place.
Professor Stephen Powis, Medical Director of the NHS England, has described the operation as groundbreaking and “just one example of the NHS world’s leading innovative treatments”.
Such an operation at such an early stage of pregnancy – with a mila of only 11 inches – is still not without significant risk, however.
The chance of losing Mila was one in 100, and it could cause Helena’s uterus to rupture. There was also a risk that Helena would think about it herself, which led to some difficult conversations with Ian.
Helena recalls: “He said:” Are you doing the right thing? It has to be right for you. ‘
“But I felt like I had to do it for her – to give her the best chance at a decent quality of life.”
Fortunately, there was little time to think about the possibilities. The couple were told that the operation had to be done within a four-week window while Helena was between 23 and 26 weeks pregnant. Too early and the baby is still too young to have an operation. too late and the damage cannot be reversed.
But first, Helena had to undergo a series of tests and scans in order to be accepted for the operation.
If Mila was unfortunate enough to have a chromosomal disease and spina bifida – like Down or Edward syndrome – the operation would be refused. Helena knew that at 41 the chances were higher than with younger women.
“It was a very long two weeks,” says Helena now. “I was so stressed out just staring at the walls and waiting for the phone to ring.”
It was a great relief when they got permission on December 3rd. The operation was due to take place five days later at the Belgian university hospitals in Leuven, funded by the NHS and led by world famous fetal surgeon Professor Jan Deprest with a team of NHS and Belgian doctors.
But even with such special care, it was only natural for Helena to worry. “I was scared,” she admits. “I’m not afraid of the operation – but I’m afraid of losing it.
“I know one percent is a very slim chance, but the risk of spina bifida is one in 1,000. In my opinion, at the time, this meant that I had a much greater chance of losing her in surgery than something that had already happened. ‘
She and Ian took the Eurostar to Belgium on Sunday 6th December. When the recent coronavirus crisis escalated in the UK, they first had to get papers showing they had an exceptional reason to travel.
It was early on the morning of December 8th when Helena, tired and stressed, was wheeled into the theater after an uncomfortable night. She had been alone overnight as visiting restrictions meant Ian couldn’t be with her. When he left, he promised to call her as soon as she was no longer in the theater.
Just before the anesthetic started, Helena’s NHS advisor Dr. Emma Bredaki her, put a soothing hand on her shoulder and told her, “You are getting the star treatment.”
During the intensive four-hour operation, Helena was passed out when the 30-strong team went to work.
In addition to the fetal specialists, the operation required neurosurgeons, two anesthetists – one for Helena and one for Mila – obstetricians, pediatric surgeons, radiologists and neonatologists in case the baby had to be delivered in an emergency.
It was 12.30 p.m. when Helena opened her eyes, dazed. While there was obvious relief for her own sake, her first desperate thoughts were for her baby.
“I just wanted to know that she was okay,” she says. ‘When Jan told me it was her it was a great relief to hear. It felt like a massive weight had been removed from me. ‘
She stayed in the hospital for a little over a week while Mila’s condition was monitored, and they returned home on December 23.
She was reassured that the procedure had gone as well as it could have been, but ultimately its success would not be known until after Mila was born. This would happen in 12 weeks, on March 19, the date doctors planned to have a caesarean section 36 weeks and five days after Helena’s pregnancy.
That didn’t go smoothly either. Shortly after Christmas, when Helena was 25 weeks pregnant – much too early for Mila to be born – she went into labor. Fortunately, these were brought under control with medication.
Helena recalls: “I was very scared – and sat on a chair every day without moving.”
But in the end, Mila’s entry into the world went smoothly. She was born at 3:30 p.m., weighed 6 pounds 4 ounces, and announced her arrival with a loud scream.
“I was so pleased that she was finally here,” says Helena. “To my surprise and delight, they just treated her like your typical baby.”
The doctors carefully examined Mila for the first few days, but there was no sign of paralysis. Now she can feel her toes, have almost normal movement, and her bladder and bowels are working normally. While there is some fluid in their brain – one of the lesser symptoms of spina bifida – doctors are not affected.
Mila is currently undergoing frequent screening at Great Ormond Street Hospital in London.
Helena says: “We have to live day in and day out, but everything is looking good at the moment.”
And for Helena and Ian, their little family of four is now – finally – complete.
“You know, I never thought it would happen,” she admits. “I thought I just had to accept that I was blessed with a child.
“But being blessed with someone else shows that miracles happen after everything we’ve been through.”