'Extremely' rare condition leaves one-year-old girl fighting for her life

·4-min read

At the age of one, Maddison Hunter has spent most of her life in a Sydney hospital.

Born with her heart on the wrong side, one lung and various other health problems, the toddler has been fighting to survive since her birth in April last year.

Her condition is so “extremely” rare it doesn’t even have a name, and only three cases similar to Maddy’s have been documented around the world in the last 10 to 15 years, her mum Samantha Kelly told Yahoo News Australia.

Maddy is seen smiling outside of the hospital and sedated in a hospital bed during treatment for her rare condition.
Maddy's condition is so rare it doesn't even have a name. Source: Supplied

Doctors at the Paediatric Intensive Care unit at Westmead Children’s Hospital “haven’t seen cases like her”, the 31-year-old nurse, who used to work at the same facility, said.

“She’s a bit of a miracle baby,” she added.

Ultrasound reveals multiple birth defects

When Ms Kelly was 14 weeks pregnant an ultrasound revealed Maddy’s heart was growing on the right side of her body, her kidneys had joined together and her spine featured an extra vertebrae.

Although concerned, doctors assured the mum all of her child’s organs were working well despite the deformities.

“We found out most of her issues when she was born,” Ms Kelly said.

Just moments after her birth, doctors told the 31-year-old mum-of-two and her partner Stuart Hunter, 35, Maddy had never formed a right lung, leaving her with just one.

“They said it’s super rare. Most of the teams here haven’t seen it in the country for a long time or ever,” she said.

A few months after she was born, it was revealed Maddy had Complete Tracheal Rings — a birth defect in the cartilage that keeps the trachea from collapsing.

It should grow as a child grows, but hers didn’t, affecting her ability to eat, drink and breathe properly, Ms Keppy said.

Ms Kelly is seen in the hospital with Maddy as a baby.
When Ms Kelly was 14 weeks pregnant an ultrasound revealed Maddy’s heart was growing on the right side of her body. Source: Supplied

Maddy undergoes gruelling 11-hour surgery

Almost three weeks ago, the toddler was rushed back to Westmead for a gruelling 11-hour emergency surgery after she began to struggle to catch her breath.

“Her whole airway needed to be reconstructed,” Ms Kelly told Yahoo.

Her entire chest cavity was opened during the procedure on April 9, leaving her in severe pain and still unable to eat.

She has only just come off her ventilator and spent her first birthday in the ICU.

The recovery process has been tough, Ms Kelly said.

“I was a nurse here for a long time but being on the other side of it puts it into a different perspective,” she said.

Maddy on the ventilator in hospital.
Maddy spent her first birthday in the ICU. Source: Supplied

More surgeries possible for toddler

Maddy will likely need to undergo a couple more surgeries but for now her family and the doctors are “taking it hour by hour”.

“Her anatomy is so rare they’re not sure how it’s going to grow,” Ms Kelly said.

“Her left lung and has grown bigger than normal, which is a good thing.”

There is a concern about the risk of an infection if more surgeries are performed, as “a simple small virus lands her in the ER for weeks”, the mum said.

Unable to work while Maddy goes “back and forth” to hospital, Ms Kelly and Mr Hunter have been forced to stay in nearby hotels with their three-year-old son Maverick, far from their home in south west Sydney.

Her brother and sister-in-law, who the mum says she is so grateful for, have created a GoFundMe to help the family financially as they care for their daughter.

“We are reaching out as far as possible, as parents of our own kids, family of this brave little warrior and as human beings to raise as much as humanly possible to help ease the financial burden and to give Maddy the best possible life we can,” it reads.

“The life she deserves, the life all kids deserve.”

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