Before he was born in January 2018, Charley Royer underwent a groundbreaking operation to treat the onset of spina bifida.
The birth defect, which can make a person quadriplegic, can be detected and treated during pregnancy, but opening the uterus puts the baby at risk of premature birth – and potentially more complications.
But his parents, Lexi and Joshuwa Royer were given the opportunity to try a new technique developed by surgeons at the Texas Children's Hospital, with doctors in Barcelona.
They took Lexi's uterus out of her stomach, but instead of cutting it open, they made small cuts to insert cameras and utensils to fuse the bottom of the fetal spine back together.
California's childhood treasure Lexi and Joshuwa were ready to try anything that could help their baby after suffering an abortion, struggling to conceive again, and then getting the news that their son is likely to be severely disabled.
Operation in September 201
And now at this time Charley is showing a new time showing the fruits of the surgical technique – known as fetoscopic repair – by walking, talking, and showing signs that he wants bladder control, unlike most with spina bifida.
"I didn't think it would be so positive, so happy," Lexi, 29, told the times and explained that doctors predict that he will hit all his cognitive milestones and that he will go out of his way take some time.
Charley shows the fruits of the surgical technique – known as fetoscopic repair – by walking, talking and showing signs that he wants bladder control, unlike most with spina bifida. Picture: Charley with her parents Lexi and Joshuwa
WHAT IS SPINA BIFIDA?
Every year, about 1500 children in the United States are born with spina bifida. Most cases are detected by a 20-week scan.
The most common and the most severe form of the disease is called myelomeningocele.
In patients with myelomeningocele, the spine remains open along the bones that make up the spine.
Membranes and spinal cord push out to create a sac in the baby's back.
This sometimes leaves the nervous system vulnerable to infections that can be fatal.
In most cases, surgery is performed to close the gap in the spine after birth.
However, damage to the nervous system will normally already have occurred, resulting in: partial or total paralysis of the forearms
39; Our days are just so normal. I wish I could have had a crystal ball so and seen how we are now. If only I could have known that everything should be ok. If I could have seen him sitting here, play now. I could have saved myself so many tears. & # 39;
It is a result that doctors hoped for, but could not bet on.
When Charley's condition first became apparent on the 13-week scan, Lexi and Joshuwa were recommended to consider abortion.
His case was so serious, they said he would probably have a very poor quality of life.
Spina bifida is incredibly difficult to treat and partly because it has been detected at that time, damage has already occurred.
It affects 24 babies in 100,000 and has been associated with folic acid deficiency in vitamin B.
It is a condition that describes an abnormality of the neural tube that develops into spinal cord and brain. A portion of the tube is not properly formed or there is incomplete closure of the membrane and bones, leaving the spinal cord.
As pregnancy progresses, amniotic fluid around the fetus becomes increasingly toxic to the delicate nervous tissue, as the fetus waste material accumulates, aggravating the condition and its consequences.
It is generally too late to operate after childbirth and children with spina bifida are often unable to walk, perhaps catheters must pass urine and are at risk of brain damage due to fluid buildup that may require a shunt implanted under the skin of the skull to drain it.
Charley was discovered at his 13-week scan in May 2017, it was repaired in six months as he was only 24 weeks and two days old and weighs less than 2 lb. He was then brought to term, delivered naturally in January 2018.
But even in the small window of time, as he grew into Lexi & # 39; s womb, the exposed nerves were harmed.
Since 1990 surgery "on infant with spina bifida has been performed with mixed success.
It requires a 6cm incision made in the uterus to access the baby. However, the procedure has been associated with premature birth. and other harmful side effects – such as poor cure of the uterus – for mothers to be fed by cesarean section in case of outbreaks of work during work.
The surgeons briefly removed Lexis fashion – intact and still attached to her via muscles, blood vessels and connective tissues – and performed surgery through small incisions in his side
INSIDE LEXI & BRIEF  With country and western music playing in the background – at Mrs Royer's request, even though she was under the anesthetic of Dr. Belfort, the operation with 10 doctors in the theater and numerous specialized nurses at hand started sweating in temperatures to keep the baby's heartbeat up.
Every few minutes, the pediatric cardiologist called out the heart rate – which remained stable at 150 beats per minute.
When the uterus was removed and held stable by two doctors just above the cavity, the amniotic fluid was drained from it and carbon dioxide was pumped in to keep it expanded and enabled the surgeons to move into it more easily.
An anesthetic injection was then administered to the child, although it is not known or how much it would feel pain.
Guided by the images displayed on the screen around them and working with infinite care, the surgeons made a number of small snaps in the skin along both sides of the baby's body to loosen it so that it could be opened up and over to cover it exposed spinal cord.
The skin flaps were then stitched up with five small seams to ensure that amniotic fluid that regenerated as pregnancy continued to leak.
Finally, after nearly three hours of saline solution containing an antibiotic, it was pumped into the uterus before being gently replaced within Lexi & apos; s stomach and her wounds sewn up.
Lexi and Royer searched online and found news about a new technique developed by dr. Michael Belfort, obstetrician and gynecologist at Texas Children's Hospital in Houston and his colleague, William Whitehead, a pediatric neurosurgeon, prompted them to shortly remove the uterus – intact and still attached to the mother via muscles, blood vessels and connective tissue  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 uterus – which contained a doll covered in chicken skin that served as the child.
Dr. Belfort and his colleagues have now performed 28 such operations between 24-26 weeks of pregnancy – without death – 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 that protects his nerves, which could draw on them.
Joshuwa is sure Charley will be active and independent, no matter what hiccups lie ahead, and tells Times: "I imagine him one day in the yard with me, teaching him things, working on things, being self-sufficient, attaching cars and things around the house.
Lexi honestly told the times about the emotional turmoil that comes with maintaining such a sensitive operation with your unborn child, and describes flashbacks to the diagnosis and wakes up and cried six months after Charley was born, although he did well
& I was overwhelmed, and so tired, & # 39; said Lexi and added: & # 39; At that time, I had to Just get through it. Then I was reliving.
Like all parents of disabled children, they are now considering how to break this delicate, nuanced and complex part of Charley's identity with him.
39; I think about it all the time & # 39;, Joshuwa Times told "But I don't want to drill him or limit him or create disabilities in his mind. We do not want this to be his identity. And we don't want to pour into him what we went through. "