Suf­fer­ing be­hind blue eyes

South Waikato News - - Front Page - LUKE KIRKEBY

Be­hind lit­tle Eklavya Tawakasharma’s star­tling blue eyes is suf­fer­ing day in and day out.

The Toko­roa eight-month-old, whose Turk­ish name means one love, was born with se­vere grade three sub­glot­tic steno­sis and has been in and out of hospi­tal ever since.

The con­di­tion means he has an ex­tremely nar­row air­way and can­not breath with­out a tra­cheostomy tube which was fit­ted al­most im­me­di­ately af­ter birth.

The tube re­quires reg­u­lar suc­tion­ing to pre­vent mu­cus buildin up and 24/7 mon­i­tor­ing by his de­voted par­ents who en­sure it doesn’t ac­ci­dently come out or get blocked.

It also has to be changed weekly and needs to be done fast to pre­vent the hole in his throat where it is in­serted from clos­ing.

Mother Molly Tawaka said she wouldn’t wish the con­di­tion upon anyone.

‘‘With­out the tube he just wouldn’t sur­vive.

‘‘It’s scary, es­pe­cially if I am by my­self be­cause you re­ally need two peo­ple to fit it and I have to watch him like a hawke be­cause he pulls it out,’’ she said.

‘‘I’ve al­ready had an emer­gency change. It gets re­ally blocked and he gets to the point where he turns blue.’’

‘‘We have just about lost him sev­eral times and I can’t change it my­self any­more. It has got to me see­ing him about to die so we have to travel to the hospi­tal now,’’ she said.

Tawaka said although the con­di­tion, which had no known cause, was not un­com­mon it was rare for ba­bies to be born with it.

‘‘ When he was born he was only breath­ing through the size of a pin­hole,’’ she said.

‘‘They said they had never fit­ted a tra­cheostomy on a new­born be­fore but thought they would give him a sec­ond chance and I am re­ally thank­ful for that,’’ she said.

Tawaka said de­spite a few hours in the morn­ing when a carer came to help, she never left Eklavya’s side. There is hope though. ‘‘We have just come back from Star­ship and they have said they can ei­ther op­er­ate when he is 10 kilo­grams or two.

‘‘He won’t be able to talk un­til then but he won’t have to have a tra­cheostomy any­more,’’ she said.

To do­nate to sup­port the fam­ily, visit givealit­ eklavy­atawaka.

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