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Wednesday, December 2, 2020

Googong family raising money for son’s medical needs

Whitney and Dave Gregg from Googong are selling novelty socks to raise money for medical equipment at the Children’s Hospital at Westmead, that they say could have prevented 13 of their chronically ill son Connor’s 15 operations.

Whitney is selling the socks, because if the equipment had been available at Westmead, she said it would have saved her little man hours of surgery, months of recovery time and more than a year of pain and struggles.

Connor’s complex medical needs require a Manometry machine, which uses highly sensitive tubes to measure pressure changes in the human body, including the oesophagus, duodenum, colon and anus. 

The machine costs $207,000 and is already used in Melbourne, Adelaide, Brisbane and Perth, but not in NSW or the ACT.

Connor was slated to travel to Melbourne for his treatment, but restrictions have made that impossible.

Whitney said the stoma nurse (patient care specialist in colostomy, ileostomy and urostomy) at Westmead “is always so busy she needs to be in so many places at once and can’t”.

The couple have fought “long and tough” for Connor, even before he was born.

Their difficulties conceiving finally resulted in twins, but at 13 weeks’ gestation, they lost one of their boys.

Whitney said it was the “most heart-breaking thing” and remains heartbreaking to this day.

“The grief is still so raw and no doubt it always will be,” Whitney said.

At 23 weeks, Whitney went into labour and the team from the Neonatal Intensive Care Unit (NICU) came into Whitney’s room to have “the talk that no one wants to have”. 

As her contractions continued to get stronger, she was prepped for a C-section but an injection of terbutaline and GTN patches finally took hold and Connor stayed safe in utero and kept growing.

In the next 10 weeks, Whitney had six more trips to the birth unit to stop early labour.

On Thursday 1 February 2018, at 33 weeks, Whitney went into labour for real and much to the delight of sister Lola, Connor was born three days later – weighing in at 2kg.

“It was the longest three days of labour. My whole body was numb. I was mentally and physically exhausted, but my body knew it was time for Connor to come.”

As much happiness as Connor’s arrival brought the family, their difficult path continued.

His tummy was big, and he was taken to the NICU to get help breathing.

At 16-hours-old Connor crashed and for two days fought for his life.

Connor got stronger, but his bowels didn’t open, and he needed an enema.

After two weeks he was sent home, but his parents knew something was still wrong.

Whitney said they took Connor to the Westmead children’s emergency so many times “they lost count” and each time he was given laxatives.

Several times he was admitted with a high temperature, but the doctors could not figure out the problem.

For almost a year Connor struggled with weight loss, vomiting, and had to be fed through a tube.

His exhausted parents finally found some relief when they met gastro specialist Dr Susan Siew.

Dr Slew ordered different tests, adjusted Connor’s formula, which improved his digestion, and involved Dr Torey Lawrence, who Whitney credits for saving her little boy.

Whitney said before Dr Torey reached out for advice from doctors “from all over”, Connor was surviving on three adult doses of laxatives, plus an enema and bowel prep, every day.

From January 2019 to August 2020 Connor had surgery 15 times and has a colonoscopy bag.

Whitney said it has been amazing that he has been able to use his bowels and do things a normal two-year-old would do.

“We have never seen him so active; he talks so much now, he has adjusted himself to climb and do many things,” Whitney said.

“There is such a stigma around people with bags but, in hindsight, they save lives.

She stressed the importance of these machines for the diagnosis and treatment of kids like Connor and their families.

“Kids and their families need help. It is mentally draining. We need to watch what they eat and drink every minute of the day.

“If I could give the $200,000 to help I would do it in a heartbeat without a second thought but there has to be more done. There needs to be a clinic for Dr Torey like they have at Royal Children’s Hospital in Melbourne.”

Federal Member for Eden-Monaro Kristy McBain has written to the NSW and Commonwealth Health Ministers on behalf of the Gregg family.

The NSW Health Minister was approached for comment but has not yet responded.

The range of bright, colourful socks is available at Ms McBain’s office and the Australian War Memorial for $15 a pair.

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