DON’T HOLD HER BACK
Little Sené de Wet did not show her parents her hands while she was still in the womb. During routine gynaecological sonars the baby girl kept her tiny limbs tucked away under her chin.
That is why her mom and dad, Nadia and Wouter, were shocked to discover their baby’s hands had not fully developed when she was born on 1 November last year. The couple also has a four-year-old daughter, Winandi.
“I remember lying on the operating table after undergoing a caesarean section and glancing at Sené while she was being examined by the paediatrician. I immediately realised something was wrong with her hands,” remembers Nadia, a full-time mom from Benoni.
Sené was born with only two fingers on her left hand. The five fingers on her right hand are webbed and shorter than usual, because the middle joints did not develop at all. The bone structure of her right hand is also incomplete.
Doctors would later tell them their beautiful girl was born with a rare congenital abnormality called symbrachydactyly, a tongue twister they had never heard of before Sené’s birth, but which has become a part of their everyday vocabulary.
Wouter remembers how Sené was rushed off for various tests directly after birth.
“There were so many needles and tests, it was terrible,” Wouter says. “I kept going into the examination room to check up on her and felt overwhelmed by the number of people swarming about. I could only imagine from seeing all the needle marks what she had to go through in the first few hour of her life, it was very overwhelming just to fathom the idea that such a small baby has to go through something like that. Of course these tests were necessary, but when you believe your child is in pain and broken, you want to protect her from any more anguish.”
For Nadia the pain of not being able to hold her child after birth was intolerable.
“I could hear her crying in another room, but could barely move myself, it was really tough,” she says. with their new reality.
“Nadia had a perfect pregnancy and suffered no complaints,” Wouter explains.
“Unlike tests for Down syndrome, which can be done in utero, no tests can be done before birth to establish the likelihood of symbrachydactyly. It can only be seen on a sonar. If parents are informed of something like this early in the pregnancy they can prepare themselves better and will know what to expect. We never had that privilege.
“That is why it hit me like a ton of bricks to realise something was wrong with our baby.
“I cried for days on end and so much went through my mind: What did I do to cause this? Is there something wrong with my genes?”
Results from the tests Sené had to undergo after birth and an evaluation by a paediatrician with a special interest in human genetics showed that genes were in fact not to blame for Sené’s condition.
Although there is still no real certainty about what caused her symbrachydactyly the paediatrician suspects problems with the blood supply to the placenta, possibly caused by a blood clot, might have resulted in the limited development of Sené’s hands at between six to eight
The fact that they were not prepared for Sené’s condition made it even harder to come to terms with it. Both Wouter and Nadia received treatment for depression, although they are slowly coming to grips The De Wet family – Wouter and Nadia, with daughters Sené (5 months) and Winandi (4 years) – are keen to raise awareness on symbrachydactyly, the condition which affects Sené’s hands.
LIKE ANY OTHER BABY Despite the challenges she has faced in her short life Sené is a happy, healthy five-month-old who draws attention wherever she goes – not because of her hands, but because she is a gorgeous baby.
“She has real attitude, she’s all smiles and she almost never cries, apart from the cutest little fake-crying sound she makes if she wants our attention,” Nadia says. “Apart from a bit of colic for the first few months we have had no complaints and her development is completely normal.”
Wouter taught Winandi how to give her baby sister a “Heidi-kiss” before going off to school in the morning.
“The two rub their noses together and it’s amazing to see the bond that has already formed between them,” Wouter says.
Their eldest has only shown love for her baby sister.
“I was so worried about their first meeting in the hospital,” Nadia recalls. “But the first thing Winandi said after seeing her sister’s hands, was that they were so small and beautiful.
“I am amazed that someone so young and with no life experience, could immediately say that her sister was special. Winandi is a real ‘big sister’ and tries to help me with Sené in whatever ways she can.”
A recent drawing by Winandi made her mother’s heart swell with pride.
“She drew the outline of her own hand with an outline of her fingers held close together to resemble Sené’s hands next to it. I am keeping the picture forever.”
Although she loves her daughters equally, Nadia feels especially protective of Sené.
“She has the most beautiful belly laugh and is so damn cute. But I do worry that her beautiful smile and laugh will be wiped away in future when she is faced with challenges due to her hands, or when people comment on it.” day, but for now doctors are still unsure whether Sené will even be able to use her right hand.
The possibility does however exist that Sené, like others with symbrachydactyly, will adapt to her disability and lead a normal life.
“As a parent, you know your child will develop in a certain sequence, but with Sené I worry about the basic milestones. Will she be able to pull herself up against furniture to learn how to walk? Will she even be able to crawl?” Wouter says.
Nadia shares these worries, but adds that Sené has already proven them wrong in many respects.
“I was extremely concerned that she would not be able to hold her own bottle, or put her dummy back in her mouth, but the other day she held her bottle by herself.
“She also has a way of sticking both of the fingers on her left hand into her mouth at the same time and sucking it – we call this her ‘dummy hand’.”
There are times when Nadia can see that Sené becomes frustrated because she wants to make her hands do things they simply can’t, but in general their little fighter carries on as if nothing is wrong. Even tummy time has not proven to be a problem.
“Her normal is our abnormal and her
The De Wets have no certainty about what the future might hold, although they do know there are many trips to the orthopaedic surgeon and cardiologist in store. Although nothing can be done for Sené’s left hand, the fingers of her right hand might be partially separated one