Doctors said he would be paralyzed from the waist down for life due to a severe case of spina bifida, spotted on his 13-week scan.
But after groundbreaking surgery while he was still in the womb, 18-month-old Charley Royer is now tottering away.
And his parents, Lexi and Joshuwa, say even Charley seems astounded by his own abilities.
‘He’s so happy, when he walks he says “woah!”‘ Lexi told Good Morning America, in their first TV interview displaying Charley’s prowess in their garden in California.
‘It’s almost like he can’t believe he’s doing it himself.’
Charley Royer was expected to be paralyzed from the waist down his whole life due to spina bifida, but thanks to surgery in the womb he is not
His mom, Lexi (pictured), says even Charley is stunned by his own progress when he walks
Joshuwa (right) is certain that, no matter what hiccups lie ahead, Charley will be active and independent
Charley is displaying the fruits of that surgical technique — known as fetoscopic repair — by walking, talking, and showing signs that he will have bladder control, unlike most with spina bifida. Pictured: Charley with his parents Lexi and Joshuwa
When Charley’s condition first became apparent on the 13-week scan, Lexi and Joshuwa were advised to consider abortion.
His case was so severe, they said, he would likely face a very poor quality of life.
It was devastating for the couple, childhood sweethearts who’d suffered a miscarriage and had been struggling to conceive.
‘I was really excited, we didn’t know if it would happen for us so it was a really exciting time I couldn’t wait to tell him,’ Lexi told GMA, gesturing to Joshuwa.
‘She [the nurse] was showing us the heart, the lungs, everything looked good.
‘And then the tone kind of changed.
‘They said most children born with a lesion that high and that severe are paralyzed from the waist down.’
The couple jumped into online forums, trying to research cures, treatments, or surgeries.
They came across information about a new technique being tested at Texas Children’s Hospital, developed by their surgeons with doctors in Barcelona.
It would involve pulling Lexi’s uterus out of her belly, but instead of slicing it opened, they would make two small incisions to insert cameras and tools, to fuse the base of the fetus’s spinal column back together.
Lexi and Joshuwa were ready to try anything that might help their baby.
‘I felt in my gut that this was the best thing for us, for him. That it could give him the best chance,’ Lexi told GMA.
‘So I knew it was the right thing but it was hard. I just prayed and prayed.’
The September 2017 operation, reported and shot by the New York Times, was a success.
The surgeons briefly removed Lexi’s womb — intact and still attached to her via muscle, blood vessels and connective tissue — and performed surgery through tiny incisions in its side
‘I didn’t think it would be so positive, so happy,’ Lexi, 29, told the Times, explaining that doctors predict he will hit all his cognitive milestones, and that he will walk unaided, it may just take some time.
‘Our days are just so normal. I wish I could have had a crystal ball then and seen how we are now. If I just could have known that everything was going to be OK. If I could have seen him sitting here, playing now. I could have saved myself so many tears.’
It’s a result doctors hoped for but couldn’t bet on.
Spina bifida is incredibly difficult to treat, in part because by the time it is detected, damage is already being wrought.
It affects 24 babies in 100,000 and has been associated with B-vitamin folic acid deficiency.
It is a condition that describes an abnormality of the neural tube, which develop into the spinal cord and brain. Part of the tube does not form properly or there is incomplete closing of the membrane and bones, leaving the spinal cord exposed.
As pregnancy progresses, the amniotic fluid surrounding the fetus becomes increasingly toxic to the delicate nervous tissue as fetal waste material accumulates, worsening the condition and its consequences.
It is generally too late to operate after birth and children with spina bifida are often unable to walk, may need catheters to pass urine and are at risk from brain damage because of a fluid-build up in the brain which may need a shunt implanted under the skin of the skull to drain it.
Charley’s was spotted at his 13-week scan in May 2017, it was repaired at six months, when he was just 24 weeks and two days old and weighs less than 2lb. He was then carried to term, being delivered naturally in January 2018.
But even in that small window of time, as he grew in Lexi’s womb, the exposed nerves were subject to damage.
Since the 1990s, ‘open surgery’ on babies with spina bifida has been performed with mixed success.
It requires a 6cm incision made into the womb to access the child. However, the procedure has been linked to premature births and other harmful side-effects — such as poor healing of the uterine scar — for mothers who must give birth by cesarean section in case of womb rupture during labor.
The new technique, developed by Dr Michael Belfort, chief obstetrician and gynecologist at Texas Children’s Hospital in Houston, and his colleague, Dr William Whitehead, a pediatric neurosurgeon, allows them to briefly remove the womb, rather than making big incisions.
‘We make two very small slits in the wall of the uterus and we put in some little ports and then through those ports we put some tiny instruments and do the surgery inside the uterus,’ Dr Belfort told GMA.
The procedure took three years to develop in collaboration with doctors in Barcelona.
The two surgeons perfected their technique by practicing with a rubber football — replicating the womb — which contained a doll covered in chicken skin, which acted as the baby.
Dr Belfort and his colleagues have now performed 28 such operations at between 24-26 weeks of pregnancy — with no deaths — since 2014, as reported in the journal Obstetrics & Gynecology. Charley’s was the first reported.
It is not guaranteed, but very likely, that Charley will require more surgery as he grows, and his body develops around the scar tissue protecting his nerves, which could tug at them.
It is not guaranteed, but very likely, that Charley will require more surgery as he grows, and his body develops around the scar tissue protecting his nerves, which could tug at them
Spina bifida is incredibly difficult to treat, in part because by the time it is detected, damage is already being wrought
Joshuwa is certain that, no matter what hiccups lie ahead, Charley will be active and independent, telling the Times: ‘I imagine him one day in the yard with me, teaching him stuff, working on stuff, being self-sufficient, fixing cars and stuff around the house.’
Lexi candidly told the Times about the emotional turmoil that follows enduring such a sensitive surgery with your unborn child, describing ‘flashbacks to the diagnosis’ and waking up crying six months after Charley was born, even though he was doing well.
‘I was overwhelmed, and so tired,’ Lexi said, adding: ‘At the time, I just had to get through it. Then I was reliving it.’
Like all parents of children with a disability, they are now contemplating how to broach this delicate, nuanced and complex part of Charley’s identity with him.
‘I think about it all the time,’ Joshuwa told the Times. ‘But I don’t want to bore him, or limit him, or create a disability in his mind. We don’t want this to be his identity. And we don’t want to pour into him what we went through.’
