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The fight to save Dominic

Monday August 28, 2017 Written by Published in Local
Despite all Dominic has been through, the wee fi ghter is now recovering and starting to live a normal childhood. His favourite toy is cookie, his cookie monster toy. 17082527 Despite all Dominic has been through, the wee fi ghter is now recovering and starting to live a normal childhood. His favourite toy is cookie, his cookie monster toy. 17082527

CI News reporter Shae Osborne tells the heart-rending story of biliary atresia sufferer Dominic Joseph-Kura, who at just nine months, has endured surgery, biopsies and even a liver transplant.

That Dominic is alive today is testimony to the skills of the medical profession in New Zealand, and the massive efforts of his Cook Islands family; who all rallied together to give him a chance at living a normal life. Today, the family is completing a runathon around Rarotonga in an effort to raise funds for the Ronald McDonald House, a New Zealand charity which came to their aid at a time of desperate need.

 

For the average infant, their biggest concerns are when the next meal is, what toys can make the loudest noise, or how many toes they can fit in their mouth.

But the issues faced by Dominic Joseph-Kura are much more serious than that.

At just nine months old, the young boy has endured hours of surgery, biopsies, a liver transplant, has had countess medications pumped into his tiny body and at one stage, even stopped breathing.

Dominic is the first child in the Cook Islands to have been diagnosed with biliary atresia, an illness his family had never heard of before.

But less than a year later, and still dealing with the harsh realities of Dominic’s illness, the family want his story to be told. They hope it will raise awareness and help others know what warning signs to watch for.

Dominic was born in May 2016, a healthy little boy to two young parents and the first grandson in the family, leaving everyone overwhelmed with the arrival of their “bundle of joy”.

Initially Dominic grew like every other newborn. He was gaining weight and getting taller, and the only health concern was that he had contracted mild jaundice.

But gradually his jaundice worsened, spreading to the whites of his eyes and causing his family to become increasingly worried.

After three months in and out of hospital, numerous tests and doctors his condition only worsened.

“His stomach began to swell, he wasn’t sleeping through the night because of his terrible fevers and the only way I could soothe him and lower his temperature was by feeding him nu,” said Dominic’s grandmother, Tangi Ruvea.

Nu became a staple of Dominic’s diet, changing only between coconut juice and milk, as any solid food would not stay down.

In October his family pushed for x-rays and other tests to be done to see if anything was wrong in his digestive system. The results showed that Dominic was in serious danger.

Two days later, after the family arranged emergency passports, Dominic was on the way to New Zealand with his grandmother and nurse Kelly Bullivant from Rarotonga Hospital. Further tests indicated his liver was not functioning properly.

Tangi was told that Dominic’s spleen and liver were swollen and that he suffered from Hyperbilirubinemia (extreme jaundice).

After more tests, and at just five months old, Dominic was diagnosed with Biliary Atresia. This meant that the duct which flushes the bile out of the liver and into the gallbladder wasn’t working. The bile was building up in Dominic’s liver and damaging it irreversibly. The only cure: A liver transplant.

Dominic’s mum was flown to New Zealand urgently so she could give consent for him to be put on the liver transplant list.

Dominic was put on nine different medications and his heart, lungs, and bloods were checked every day.

The family were later advised they would need to keep Dominic healthy and relaxed during this time, and he would need to gain at least 10 kilograms to maximise his chances of surviving the transplant. It was a daunting thought for the already-anxious family.

Just before the end of the year, the family was cleared to take their little boy to visit extended family in Auckland. Everything was going well until early on the morning of Monday, January 2, when Dominic’s condition went downhill rapidly.

“He started vomiting up blood and was rushed back to hospital and given a blood transfusion,” said Ruvea.

For three weeks Dominic remained in the Pediatric Intensive Care Unit (PICU) before being discharged to return to the transplant ward in Starship.

Things took yet another turn for the worse when doctors found fluid in his lungs, which meant another trip back to PICU.

On the way down to the ward, Dominic stopped breathing and had to be revived by medical personnel.

The news of Dominic’s deteriorating health travelled back to the Cook Islands, where the rest of his family travelled to New Zealand in order to pray with and support his grandmother and mum.

Soon afterwards, it was realised that Dominic needed a liver transplant immediately and he was moved up the transplant list.

His father volunteered to be tested to see if he was a match. However, the day he was to begin testing, a suitable organ was found.

Dominic had the transplant that same day, undergoing an eight-hour surgery. Doctors said his infected liver was so defective and swollen, it was difficult to remove.

From here, Dominic spent three weeks recovering in PICU and had to have a second operation due to a blood and food leak in his oesophagus. After that, he had to be fed through a tube. But things were looking up for the youngster.

Dominic is now 15 months old; the tubes that were feeding and monitoring him have been removed, and the family are making up for lost time.

“Dominic spent so long in PICU that he has to undergo physical therapy to help him build up his wasted muscle,” Ruvea said.

“He has to catch up on all the growing he missed out on, such as walking and talking.

“But even though he has been through so much in such a short time he still manages to smile.”

Now that Dominic has a chance at a normal childhood, his family said he loves watching the Wiggles, and claps to music as he starts to rebuild his muscles.

Unfortunately, due to a major lack of medical and hospital facilities in the Cook Islands, he will be unable to go home to the Cook Islands for 10 years and will remain in New Zealand until he is cleared for the trip.

Thankfully the family received major support from the Ronald McDonald House Charity, who were able to accommodate the family for seven months during Dominic’s treatment.

“We could not have made it through without their help. Words can’t even describe how thankful we are for all they did,” said Ruvea.

Now back in the Cook Islands, Ruvea hopes to publicise the importance of monitoring new-borns, and watching out for early signs of illnesses such as biliary atresia. The family also hope to raise money and donate it to the Ronald McDonald House Charity – it’s their way of saying thank you for all the support during their difficult time.

Ruvea explained that if they hadn’t pushed for testing and information about Dominic’s results and condition, the youngster could very well not be alive today.

Prolonged jaundice and pale faeces or dark urine are major red-flags that indicate a child is not well, and should not be ignored. If your baby, or the child of someone you know is exhibiting these symptoms, go to your local paediatric service or doctor as soon as possible.

Dominic and his family hope knowledge of this illness and Dominic’s story will highlight the warning signs of sickness in new babies.

A runathon fundraiser is being held by Ruvea and the rest of the family in Arorangi this morning, with the support of the Puaikura district and the Girl Guides. The group will travel towards Titikaveka and ask the public to contribute a gold coin donation in a bid to support the charity that helped keep Dominic alive.

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