LIT­TLE HANDS

DON’T HOLD HER BACK

Your Baby & Toddler - - Front Page -

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

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