Rushed to intensive care

By Laura North

On the 23 June 2015, a month early, our third child Elijah was born.

After an unremarkable pregnancy we expected nothing other than a healthy, happy, wee baby, just like his brother and sister.

Less than an hour after he was born he was rushed to the Neo-natal intensive care unit and from here our journey into the world of disability began.

 

The need for special assistance

For the first year of his life we were drip fed information from medical professionals. He had an unexplained oxygen requirement and was unable to suck properly and was losing weight without a feeding tube.

At around four months it was noticed that is eyes were not working as they should. We were told he had light perception only and was blind. It was also clear around this time that he was not meeting any milestones on time.

While a typical baby would smile at 6 weeks, Elijah did not do so until 5 months (but what a fantastic day that was!).

We began to see therapists and numerous others including a dietician, feeding specialist, vision resource teacher, ears nose and throat specialists, paediatricians, the works.

We became frequent fliers at Wanganui Hospital and began weekly visits there to see the various specialists and undertake therapy.

The many faceted elements of microcephaly

After a three week stay in Starship Hospital, it became evident that Elijah has microcephaly. This means he has a small head and his brain is not growing as it should.

This is causing his severe vision problems, severe global developmental delay (aka intellectual disability), failure to thrive (he now has a peg in his stomach which he is partially feed through). The running total is currently 14 issues that effect most parts of his body, including two holes in his heart.

The doctors all agree that he has an undiagnosed genetic condition, but despite genetic testing we still do not know what this condition is, therefore no one can say for sure what his future will look like.

At almost two years old he can not walk, talk or sit up by himself. He cannot feed himself or let us know his wants or needs. He has an early intervention wheelchair and standing frame and we hope to move to a walking frame soon.

Valuable but costly therapy available in Australia

Recently, we became aware of the Neurological and Physical Abilitation (NAPA) Centre in Australia.

This centre offers traditional and non-traditional therapy programmes for children and adults with disabilities.

It specialises in three week intensive programmes whereby some children are able to achieve the same progress as a year of traditional therapy.

We want to take Elijah to NAPA to give him the best possible chance to learn to move and communicate and hopefully live a life that will positively contribute to society.

Each trip to the Centre will cost in the vicinity of $7,000 – $10,000 and this will be an ongoing cost, as the best chance we have for development is during these formative years when early intervention will have the most impact.

We are therefore asking for donations to help raise funds to get him to Australia for at least the next 5 years (and maybe beyond).

.(See details of the fund raising campaign in Leslie Clague’s article tomorrow.)