Spe­cial needs: A good and per­fect gift

Per­fec­tion of­ten turns out dif­fer­ent from what we ex­pect – as Sa­man­tha and Kee­gan Thomas from Dur­ban found out when their lit­tle girl was di­ag­nosed with Down syn­drome, writes Carin Be­van

Your Baby & Toddler - - Contents -

WHEN SA­MAN­THA THOMAS (34) found out she was ex­pect­ing a girl, she had a lot of fun dec­o­rat­ing the nurs­ery. “I just went pink crazy!” she laughs – af­ter all, she was al­ready mom to two boys. Above her lit­tle girl’s crib, she put up a Bi­ble verse she’d cho­sen es­pe­cially for her daugh­ter: “Ev­ery good and per­fect gift is from above.”

But when Kacey was born three weeks later, her par­ents im­me­di­ately knew that some­thing was wrong. A PRINCESS WITH A DIF­FER­ENCE “There was com­plete si­lence in the de­liv­ery room,” re­calls Sa­man­tha. She hadn’t had the pre­na­tal screen­ings for Down syn­drome, so Kacey’s tell-tale al­mond-shaped eyes were a com­plete shock – not just to Sa­man­tha and her hus­band Kee­gan (33), but to the doc­tors as well.

But with few of the other typ­i­cal signs of Down syn­drome – such as low mus­cle tone, small, low-set ears, a sin­gle fold on the palm and a large gap be­tween the first and sec­ond toes – doc­tors weren’t 100% sure.

The pae­di­a­tri­cian even asked them if they have Asian blood, be­cause, he said, “she looks like a beau­ti­ful Mon­go­lian princess”.

“He kept say­ing he was con­cerned about her eyes,” says Sa­man­tha. And yet it took a few weeks, and their own in­sis­tence, be­fore they were fi­nally re­ferred for ge­netic tests. “We couldn’t go with a ‘concern’, we needed proper proof that she is or she isn’t.”

OVER­WHELM­ING “It was all a bit over­whelm­ing, be­cause the doc­tor just sat there writ­ing re­fer­rals. That’s all he was do­ing – all th­ese big en­velopes!” They had to go for ge­netic tests to confirm Down syn­drome, as well as check for com­mon con­di­tions as­so­ci­ated with the syn­drome such as vi­sion, hear­ing and heart prob­lems.

At last, they got their con­fir­ma­tion. Kacey was of­fi­cially di­ag­nosed with tri­somy 21, the most com­mon cause of Down syn­drome. What’s more, she had two holes in her heart: one tiny but dan­ger­ous hole called a VSD (ven­tric­u­lar sep­tal de­fect), as well as a larger AVSD (atri­oven­tric­u­lar sep­tal de­fect).

For Sa­man­tha, the events of 2016 are still very raw. “They call me wa­ter­fall!” she laughs and cries at the same time. And yet, a year and a half later, life with Down syn­drome has turned out vastly dif­fer­ent from what she’d ex­pected. “It was a bit over­whelm­ing in the be­gin­ning, but I think now that it’s a year later, it’s ac­tu­ally not that bad.”

In fact, in many ways Kacey sounds like a typ­i­cal tod­dler. She likes to play with her ball and teddy, loves her bike, copies ev­ery­thing her brother does, and is pick­ing up all sorts of cute man­ner­isms. “When I say ‘No’, she lifts her fin­ger and says, ‘No, no no!’” And of course, like any tod­dler, she gets very up­set when things don’t go her way.

She’s also a very de­ter­mined lit­tle girl. With help from her par­ents, physio, oc­cu­pa­tional and speech ther­a­pists, Kacey is meet­ing a lot of her mile­stones, in­clud­ing sit­ting, stand­ing and learn­ing to walk. “She re­ally perserveres!” boasts Sa­man­tha.

What’s more, at her last check-up, the car­di­ol­o­gist found no sign of the VSD — it seems that this dan­ger­ous hole in her heart has closed on its own.

NO LIM­ITS

At this young age, it’s still too early to tell ex­actly what im­pact her Down syn­drome will have on Kacey’s fu­ture life and abil­i­ties. But Sa­man­tha has learned to take one day at a time, and to en­joy and cel­e­brate each mile­stone as and when it comes.

If she has one wish for her daugh­ter, it’s that she can “do her best; be her best. And be treated like ev­ery­one else.” This is par­tic­u­larly hard. “It re­ally frus­trates me when peo­ple say, ‘Oh, maybe she’ll swim, maybe she’ll do this, maybe she’ll do that,’” says Sa­man­tha.

“Some­times I get so an­gry – not maybe, she will! Don’t put lim­its on her!”

De­spite the shock of those first mo­ments, and de­spite all the sac­ri­fices, the health prob­lems and the tears and wor­ries of the past year and a half, Sa­man­tha has no re­grets.

“She re­ally is a light in our lives. We’re re­ally, re­ally blessed to have her. She’s a good and per­fect gift in­deed!” YB

Top: Princess… At birth, the pae­di­a­tri­cian thought Kacey looked like a “beau­ti­ful Mon­go­lian princess”. She is now a year old. Above: Happy fam­ily: The Thomas fam­ily: Kee­gan, Sa­man­tha, Tyler (7), Dy­lan (4) and Kacey (1).

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