Baby born with no arms or legs because of a rare condition that affects just a few families worldwide defies the doctors who said he could die at birth
- Jasmine Self was five months pregnant when she discovered her son’s condition
- Baby RJ Wilson suffers from tetra-amelia – defined as the absence of all limbs
- He also has severe malformations of the face, heart, skeleton and genitals
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A baby has been born with no arms or legs because of a rare condition which affects just a few families worldwide.
RJ Wilson’s mother Jasmine Self, 24, was five months pregnant when an ultrasound scan revealed her little one’s limbs were not developing.
The four-month-old suffers from tetra-amelia syndrome – defined as the absence of all four limbs, as well as severe malformations of the face, heart, nervous system, skeleton and genitals.
After being advised to terminate her pregnancy, Ms Self and her boyfriend Rondell Wilson decided to not to give up on their baby, with RJ being born at 29 weeks on September 29.
The youngster arrived weighing just 2lb 4oz (1kg) and spent the first two months of his life in intensive care.
Against all the odds, the youngster is now thriving at his home in Florence, South Carolina.
Baby RJ Wilson (pictured left and right, with his mother Jasmine Self, aged four months) was born with the rare condition tetra-amelia, which causes him not to have his arms or legs
After being born via an emergency C-section at just 29 weeks when his mother’s placenta detached from her uterus wall, RJ spent the first two months in intensive care (pictured)
‘I found out I was pregnant in April,’ Ms Self said. ‘I didn’t go to the doctor until August, so it was really late.
‘When I finally decided to go I could tell there was something wrong.’
Ms Self’s ultrasound technician told her to make an urgent appointment with her doctor.
‘I was sitting in the waiting room of my family doctor’s office when he came out to get me,’ Ms Self said.
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‘I could see him take a deep breath and my anxiety just went through the roof. My doctor told me my baby didn’t have any limbs.
‘I just stared and him and he asked me if I understood, then I just started crying.
‘I asked him if I did something wrong. I asked him if it was my fault because I didn’t go to the doctor for a few months.’
Ms Self’s doctor reassured her she was not to blame for her baby’s condition.
RJ (pictured left and right with his mother) has managed to escape with relatively few complications, however, his parents struggle to find clothes that fit, as well as a safe car seat
Ms Self initially considered terminating her pregnancy when she discovered her son’s syndrome during a five-month scan. Refusing to give up on her son, the hotel receptionist went on to have a relatively smooth pregnancy, before her placenta detached from her uterus
‘I was sent for follow-up appointments where they explained the condition to me and told me he could have other malformations,’ Ms Self said.
Ms Self – who works as a hotel receptionist – then faced the difficult decision of whether to continue with her pregnancy.
Tetra-amelia syndrome is a very rare disorder in which a baby is born without any of its limbs – it has only been recorded in a few families around the world, according to the US’s National Institutes of Health.
The condition is caused by a genetic mutation in a section of DNA which plays a critical role in development. Most babies die before or shortly after birth.
‘My doctors explained my options to me, and told me there was a possibility I wouldn’t be able to carry him to term, or that he might be stillborn,’ she said.
‘My boyfriend and I talked about a termination and actually booked a procedure in Washington but we I decided to go on with the pregnancy.’
Although her pregnancy went relatively smoothly, things took a turn for the worse when Ms Self was forced to deliver RJ via an emergency C-section when her placenta detached from her uterus wall.
This can lead to severe internal bleeding in the mother, as well as cutting off the baby’s supply of oxygen and nutrients.
RJ (left) will one day require a specially adapted wheelchair. Ms Self (pictured left with her son as a newborn) was forced to wait several days before she could hold RJ through armholes in his incubator. The little one was immediately rushed to intensive care for blood transfusions
After RJ was born, the youngster was immediately rushed to intensive care for blood transfusions.
‘I remember seeing a head full of hair before they whisked him away,’ Ms Self said.
The new mother was only able to hold her son on October 1, three days after he was born.
‘I put my hands into the incubator and held him in my hands,’ she said. ‘It was a happy moment.’
WHAT IS TETRA-AMELIA SYNDROME?
Tetra-amelia syndrome is a very rare disorder where a baby is born without any of its limbs.
The condition can also cause severe malformation of other parts of the body, including the face, heart, nervous system, skeleton and genitals.
The lungs are often also underdeveloped, which can make breathing difficult or impossible unaided.
Due to the severity of a sufferer’s condition, many patients are stillborn or die shortly after birth.
Tetra-amelia syndrome’s prevalence is unclear, however, it has only been reported in a few families worldwide.
It is caused by a genetic mutation in a section of DNA that plays a critical role in development before birth.
Sufferers require life-long assistance with specifically designed wheelchairs.
Management otherwise depends on the severity of other malformations.
Source: US National Library of Medicine
Despite the severity of RJ’s condition, Ms Self counts herself lucky her son has escaped without too many complications.
But the new mother admits she worries about RJ’s future and is speaking out to encourage people not to be embarrassed to ask about her son’s condition.
‘He’s a normal baby in every way except he doesn’t have any arms or legs,’ Ms Self said.
‘He tried to grow his little legs but they didn’t develop – I call them his gumdrops.
‘He has shoulders but doesn’t have arms.
‘Adults never ask me questions but kids always speak their mind which I appreciate.
‘They ask me where are his arms and legs, and I answer them.’
Ms Self recalled a sweet moment when a little girl who attends her church asked her how RJ will learn maths at school.
‘I told her we’ll find a way,’ Ms Self said.
‘I’d prefer if people are just up-front and ask me the questions they want to.’
Despite her optimism, Ms Self and her partner – a store supervisor – struggle to find clothes to fit RJ and had to hunt for a car seat that ensured he stayed safe.
The couple also accept their son will need special help in the future, such as an adapted wheelchair.
But they still insist their little one’s future is ‘bright’.
‘RJ’s personality is great,’ Ms Self said. ‘He makes the funniest facial expressions. He definitely understands what you’re saying.
‘I think RJ’s future will be bright. I think he could be a public speaker and share his condition with the world.’
Ms Self (pictured right with RJ) insists he is ‘a normal baby in every way except he doesn’t have any arms or legs’. She adds the youngster (left) has a ‘great personality’ and a ‘bright future’
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