Suffering behind blue eyes
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 givealittle.co.nz/cause/ eklavyatawaka.