Doctors said he would be paralyzed for the rest of his life by a serious case of spina bifida spotted during his 13-week scan.
But after groundbreaking surgery while still in the womb, the 18-month-old Charley Royer is staggering away.
And his parents, Lexi and Joshuwa, say that even Charley seems surprised at his own abilities.
& # 39; He is so happy, when he walks he says & # 39; woah! & # 39; & # 39 ;, said Lexi Good morning America, in their first TV interview with Charley & # 39; s ability in their California garden.
& # 39; It's almost as if he can't believe he's doing it himself. & # 39;
Charley Royer was expected to be paralyzed by spina bifida all his life, but thanks to surgery in the womb he is not
His mother, Lexi (photo), says that even Charley is stunned by his own progress as he walks
Joshuwa (right) is convinced that Charley will be active and independent, no matter what is wrong with him
Charley shows 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. On the photo: Charley with his parents Lexi and Joshuwa
WHAT IS SPINA BIFIDA?
Every year around 1,500 babies are born with spina bifida in the US.
Most cases are detected with a 20-week scan.
The most common and most serious form of the disease is called myelomeningocele.
In patients with myelomeningocele, the spine remains open along the bones that form the spine.
The membranes and spinal cord push out to create a pocket 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 opening in the spine after birth.
But damage to the nervous system will usually have already occurred, resulting in:
- partial or total paralysis of the lower limbs
- bowel and urinary incontinence
- loss of skin sensation
When Charley's condition first became apparent on the 13-week scan, Lexi and Joshuwa were advised to consider abortion.
His case was so serious, they said, he would probably have a very poor quality of life.
It was devastating for the couple, childhood love who had had a miscarriage and had trouble getting pregnant.
& # 39; I was very excited, we didn't know if it would happen to us, so it was really an exciting time that I couldn't wait to tell him, & # 39; Lexi said to GMA, gesturing at Joshuwa.
& # 39; She (the nurse) showed us the heart, the lungs, everything looked good.
& # 39; And then the tone changed.
& # 39; They said most children born with a lesion that are high and who are severely paralyzed from the waist up. & # 39;
The couple jumped into online forums, trying to examine treatments, treatments, or surgery.
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 mean that Lexi & # 39; s uterus would be pulled out of her belly, but instead of cutting it, they would make two small incisions to insert cameras & tools to the base of the spine of fusing the fetus again.
Lexi and Joshuwa were ready to try everything that could help their baby.
& # 39; I felt in my stomach that this was the best for us, for him. That it could give him the best chance, & Lexi told GMA.
& # 39; So I knew it was right, but it was hard. I just prayed and prayed. & # 39;
The operation in September 2017, reported and shot by the New York Times, was a success.
The surgeons briefly removed Lexi's womb – intact and still attached to her through muscles, blood vessels and connective tissue – and performed surgery through small incisions in the side
& # 39; I didn't think it would be so positive, so happy, & # 39; said Lexi, 29 years old Times, explaining that doctors predict that he will hit all his cognitive milestones and that he will walk without help, it can just take some time.
& # 39; Our days are so normal. I wish I could have had a crystal ball and saw how we are now. If only I could have known that everything would be alright. If I could have seen him play here. I could have saved myself so many tears. & # 39;
It is a result that doctors hoped for but could not bet on.
Spina bifida is incredibly difficult to treat, partly because damage is already being done by the time it is discovered.
It affects 24 babies in 100,000 and is associated with B-vitamin folic acid deficiency.
WITHIN LEXI'S # 39; S BEGINNING OPERATION
With national and western music in the background – at the request of Mrs. Royer, although she was already sedated at that time – Dr. Belfort started the operation, with 10 doctors in the theater and numerous specialized nurses on hand, sweating at elevated temperatures to keep the baby's heart rate up.
Every few minutes the pediatric cardiologist called out the heart rate, which remained stable at 150 beats per minute.
After the uterus was removed and held by two doctors just above the cavity, amniotic fluid was drained from the body and carbon dioxide was pumped up to keep it expanded and to allow surgeons to enter more easily.
An anesthesia injection was then given to the baby, although it is not known whether, or how much, it would feel pain.
Guided by the images that were seen on the monitors around them, working with infinite care, the surgeons made a series of small cuts in the skin on both sides of the baby's body to release it so that it raised and could be pulled over to the exposed spinal cord.
The skin flaps were then sewn shut with five tiny stitches to ensure that the amniotic fluid, regenerated as pregnancy continued, did not leak inside.
Finally, after almost three hours, a saline solution with an antibiotic was pumped into the womb before it was carefully replaced in Lexi's abdomen and her wound sewn up.
It is a condition that describes a disorder of the neural tube that develops into the spinal cord and brain. Part of the tube does not form properly or there is incomplete closure of the membrane and the bones, leaving the spinal cord visible.
As pregnancy progresses, the amniotic fluid surrounding the fetus becomes more and more toxic to delicate nerve tissue as fetal waste material accumulates, worsening its condition and consequences.
It is generally too late to operate after birth and children with spina bifida are often unable to walk, may need catheters to urinate and are at risk of brain damage due to fluid retention in the brain that may have a shunt implanted under the skin of the skull to drain it.
Charley was spotted during his 13-week scan in May 2017, it was repaired after six months when he was only 24 weeks and two days old and weighs less than 2 pounds. It was then worn over time, and was delivered naturally in January 2018.
But even in that little window of time, when he grew up in the lap of Lexi, the exposed nerves were subject to damage.
Since the 1990s, & # 39; open surgery & # 39; in babies & # 39; s with spina bifida performed with mixed success.
It requires an incision of 6 cm in the womb to gain access to the child. The procedure, however, is linked to premature births and other harmful side effects – such as poor healing of the uterine scar – for mothers who have to give birth by caesarean section in the event of a womb fracture during delivery.
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, enables them to remove the womb for short instead of making large incisions.
& # 39; We make two very small slits in the wall of the womb and we place a few small openings and then we insert a few small instruments through those gates and we do the operation in the womb, & # 39; said Dr. Belfort to GMA.
The procedure took three years to develop in collaboration with doctors in Barcelona.
The two surgeons have perfected their technique by practicing with a rubber soccer ball – imitating the womb – with a doll covered with goosebumps that acted as the baby.
Dr. Belfort and his colleagues have now carried out 28 such operations between 24-26 weeks of pregnancy – without deaths – since 2014, as reported in the journal Obstetrics & Gynecology. Charley & # 39; s was the first report.
It is not guaranteed, but very likely, that Charley will have to operate more as he gets older and his body develops around the scar tissue that protects his nerves that might pull on it.
It is not guaranteed, but very likely, that Charley will have to operate more as he grows, and his body develops around the scar tissue that protects his nerves that might pull on it
Spina bifida is incredibly difficult to treat, partly because damage is already being done by the time it is discovered
Joshuwa knows for sure that, regardless of the bumps ahead, Charley will be active and independent and will say to the Times: & I will introduce him one day in the garden with me, teach him things, work on things , being self-sufficient, repairing cars and things at home. & # 39;
Lexi frankly told the Times about the emotional turmoil that follows such a sensitive operation with your unborn child, describes & # 39; flashbacks to the diagnosis & # 39; and waking up crying six months after Charley was born, even though he was doing well.
& # 39; I was overwhelmed and so tired & # 39 ;, Lexi said, adding: & # 39; I just had to get through it. Then I experienced it again. & # 39;
Like all parents of children with disabilities, they are now considering how to discuss this delicate, nuanced and complex part of Charley's identity with him.
& # 39; I think about it all the time, & # 39; Joshuwa told the Times. & # 39; But I don't want to bore or limit him, or create a limitation in his head. We don't want this to be his identity. And we do not want to pour into him what we have experienced. & # 39;
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