‘Completely oblivious’: Parents unaware of baby Hugh Leech’s life-threatening liver condition

To his parents and everyone else, baby Hugh looked perfectly healthy. But his GP noticed one tiny detail during a check up that ended up saving his life.

Baby Hugh Leech with parents James Leech and Tenille McDonald and big sister Maya at Ronald McDonald House. Picture: Brenton Edwards

Baby Hugh came into the world nine weeks ago.

After a uncomplicated pregnancy, Hugh Leech was born seemingly healthy, feeding well and gaining weight.

But while at his six week check, his GP thought he looked a little bit yellow.

“He looked perfect to us,” mum Tenille McDonald told The Advertiser.

However their local Kadina doctor thought otherwise and that thought saved Hugh’s life.

Hugh Leech sleeping without his tube a few days after he was born. Picture: Supplied by family

A series of blood tests, ultrasounds, scans and a seven-hour surgery revealed Hugh had biliary atresia, a rare, life-threatening, liver condition.

“If its not picked up, babies generally don’t survive over two years of age,” Ms McDonald, who is currently living in Ronald McDonald house with her partner James Leech, Hugh and the couple’s eldest daughter Maya, said.

“All the specialists were praising our doctor back home because it wasn’t easy to pick up.”

Ms McDonald said she couldn’t imagine her life without Hugh, who may need to undergo a liver transplant to survive.

Baby Hugh Leech prior to having liver surgery. Picture: Supplied by family

Hugh Leech recovering in hospital after his surgery. Picture: Supplied by family

When the GP raised a concern, Ms McDonald brought Hugh to get blood tests.

The results came back the next day and Ms McDonald was told to rush her then six-week-old son to the Women’s and Children’s Hospital for an emergency ultrasound.

“We were told the ultrasound didn’t look promising,” the 30-year-old mum said.

“He was poked and prodded with multiple blood tests to check how the liver was functioning.”

That’s when doctors decided Hugh needed a fasted nuclear medicine scan which meant he was injected via IV with radioactive tracers to see the flow and drain of bile from his little liver.

“He had to get strapped down, so he couldn’t move, and put under a huge scanner that surrounded him and sat just above his face and his whole body was very claustrophobic,” Ms McDonald said.

“If he cries you can’t pick him up or soothe him or anything, you just have to let him go … it was very scary.”

Hugh underwent three of these scans.

Hugh has been diagnosed with biliary atresia – a rare condition which can be life-threatening. Picture: Brenton Edwards

The scans revealed the “worst case scenario” and Hugh was rushed into surgery.

While he was under doctors took a cholangiogram, a specialist X-ray, before undertaking a surgery called a Kassai procedure as well as a liver biopsy.

“This procedure involves cutting the small intestine and connecting it to the liver, allowing the bile to drain directly from the liver to the small intestine,” Ms McDonald said.

The surgery was seven hours and Hugh was forced to stay in ICU for four days with a breathing tube.

“Seeing our son in the ICU connected to so many tubes and machines fighting for his life was very confronting and the hardest thing to see,” Ms McDonald said.

“After the surgery we got the news that it went well but there was a lot of damage already to his liver and that’s not what they would expect at his age, only eight weeks old.”

Leech family photo a few days after Hugh was born. Picture: Supplied by family

Leech family after Hugh's surgery with sister Maya cuddling him. Picture: Supplied by family

Ms McDonald said they won’t know whether the surgery was successful until three months pass.

“The hard thing about this condition is the constant monitoring and the unknown,” she said.

“After that six week appointment being completely oblivious of what was yet to come and then having multiple tests to surgery in just one week was the most stressful and incomprehensible situation.

“But for now we help Hugh recover, watch and monitor Hugh for infections and make sure he continues to put on weight as we prepare for the likely impending liver transplant.

“Hugh has certainly had a rough start to life but he is one very strong and brave little guy. He is a fighter.”

If you’d like to donate to Hugh and his family, you can here.

Originally published as ‘Completely oblivious’: Parents unaware of baby Hugh Leech’s life-threatening liver condition