A mum who was told her baby son would not survive has spoken of her pride, joy and relief as he approaches his ninth birthday.
Gintaras Treciokas was born with congenital hydrocephalus – fluid on the brain – and started receiving end-of-life care from East Anglia’s Children’s Hospices (EACH).
Parents Gintautas and Ausra chose to transfer him to Quidenham – the charity’s former Norfolk base – in 2015.
However, Gintaras, who celebrates his birthday next month, stunned everyone by defying the odds.
After a few weeks, his parents asked to be rereferred to the neurosurgeons, as he was thriving at home.
Incredibly, he had surgery to fit a shunt – a tube surgically inserted into the brain to drain fluid – and has survived.
“I did not believe this would be possible,” said Ausra, who is from Lithuania.
“When Gintaras was born, it was a very scary, challenging time. It was difficult to accept.
“Everything was unknown, so we put our trust in the medical professionals and people at EACH.
“We tried our best to cope but it was difficult taking everything in.
“We were fortunate to have such fantastic support from EACH.
“They helped us face our situation and I don’t know what we would have done otherwise.
“I cannot imagine where we’d be today, because we were supported in lots of ways, including helping us sort our accommodation (finding an accessible home suitable for Gintaras’ needs).
“There were so many forms to fill in, so we got help with the paperwork.
“Everyone has been immensely supportive throughout our journey and we didn’t think we’d ever be in this position.
“No-one expected this, including the doctors and medical professionals.”
Gintaras has special needs, including being non-verbal.
He can stand using a frame and has other complications, including epilepsy, problems with his hips and joints and issues relating to his heart.
However, he is undoubtedly a success story and now settled in full-time education at Chapel Green School, in Old Buckenham.
“When Gintaras is well, he is a happy, cheerful boy,” said Ausra, who, together with her 46-year-old partner, moved to England in 2005.
“He likes to occupy himself with games and toys and loves listening to everything going on around him.
“He likes going for a walk and being able to stand upright in his frame.
“He also likes cars and makes a ‘mmm’ noise when he hears one.
“He’s also very positive and excited when his dad comes home from work. They put their hands together and make a high five gesture.
“Gintaras is also very happy when he hears his grandmothers on video calls.
“He recognises their voices and when I start talking to my mum, he likes to get involved and make himself heard!
“He’s a very good boy and never causes me any problems.
“We love being together and I always look forward to him getting home from school. I start looking out for him from about 3pm and he gets home at 4pm.”
While Gintaras’ progression has been outstanding, he does still have health complications and there are ups and downs to contend with.
His next medical appointment is with a heart specialist on 1st July.
“It’s a bit worrying but I hope everything’s going to be OK,” said Ausra.
“Thankfully, things are more settled now and I love the fact he’s happy at school.
“Photos are posted every day and that makes me feel great, because I can see he’s enjoying himself and comfortable.
“I trust the school and know they want what’s best for Gintaras.
“He loves school and enjoys communicating with the other children.
“They have fun together and interact, in terms of sharing things. They give him things to play with and he gives them back, so there’s a good atmosphere between them all. I’m very grateful for that.”
Ausra admits her perceptions of a children’s hospice changed after spending time at EACH.
The family recently visited The Nook, for a Christmas Winter Wonderland event.
“When I first found out we needed to go to a hospice, I felt sad and gloomy,” said Ausra.
“I didn’t know what to expect, so was very anxious and panicky.
“However, that feeling changed, the more time I got to spend there.
“I could see how much they cared, which obviously made me feel better, and my message to other parents in a similar situation would be to put your trust in EACH.
“I can only talk about our own experiences, but I can honestly say they’re the best, most kind, lovely and caring people.
“They look after the children like their own, and want to do whatever they can to help.
“Don’t be scared and trust them, like we did. Without that support, I don’t know where we’d be today.”
EACH is releasing this story during Children’s Hospice Week, which started on Monday (17th) and runs until Sunday (23rd). It is the only week of the year dedicated to raising awareness of children’s hospice services across the UK.
As well as publishing an English version of Gintaras’ story, EACH has also translated it into Lithuanian, too. The charity’s translation services make care more accessible, with family information leaflets available in nine languages. This initiative ensures all families, regardless of language differences, can access the support and care they need.
The Nook playground pictures: Karen Self
