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Rare brain disease defies all odds

Stevie-Rose at four years-old, defying all odds
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Tiffany Frost and Jayden Welsh were advised to terminate their baby, Stevie, at 25 weeks due to a severe neurological condition called Hemimegalencephaly.

Refusing to take the doctor’s advice, Tiffany and Jayden were blown away to discover that Stevie is not only in perfect health, but she is also ahead of her age group in testing. Stevie’s rare and severe disease has everyone baffled.

Four years ago, Tiffany and Jayden were over the moon to find out they were having a baby.

Tiffany describes her early pregnancy as ‘perfect’, and that she was lucky enough not to have any sickness.  They eagerly awaited the 20-week scan, where they could find out the gender of their baby. This scan also allows doctors to see any anomalies in the baby.

Tiffany and Jayden say it never crossed their minds that something could be wrong. However a few minutes into their scan they were told that something wasn’t right, and were asked to wait to see a specialist.

They sat in the waiting room all afternoon not knowing what was wrong or how serious it was.

The specialist then told them that their baby had an enlarged ventricle in the brain, ventriculomegaly, that it was very serious, and that they would be referred to foetal medicine at the hospital.

They went home shattered, confused, and not knowing what it all meant.

After weeks of visits and scans at Christchurch Hospital, Tiffany and Jayden were still no surer as to what exactly was wrong with their wee girl. Some scans showed a huge enlargement and others appeared to show that the ventricles may be shrinking.

When Tiffany was sent for an MRI to get a closer look at the baby’s brain, their worst fears were confirmed.

Stevie was diagnosed with hemimegalencephaly, a rare neurological condition in which one half of the brain is larger than the other. Doctors advised them that, as it was so severe they would recommend a termination.

“It was really scary seeing the MRI,” says Tiffany, “because I saw it… I saw my baby’s brain was severely abnormal.”

The doctors told Tiffany and Jayden that Stevie would be severely disabled. There would likely be a huge amount of seizure activity, severe development issues and that post birth she would need a shunt in her brain to drain fluid.

“I was being advised to terminate Stevie at 25-30 weeks,” recalls Tiffany. “It was awful. I told them to stop saying that. I am having this baby!”

Tiffany and Jayden say they were scared and uncertain of what the future held.

“It just wasn’t an option for me to terminate my baby,” says Tiffany. “We would just have to deal with it. I had this unwavering faith that no matter what, everything was going to be OK.”

Meanwhile, Tiffany had been dealing with her own set of potentially fatal complications. Her ongoing issues with high blood pressure during the second half of her pregnancy turned into preeclampsia.

In the end, the baby developed IUGR, intrauterine growth restriction, which meant she stopped growing, and Tiffany was rushed into hospital at 33 weeks for an emergency caesarean.

Stevie-Rose Welsh was born seven weeks early, weighing three pounds and could fit into her father Jayden’s hand.

“I didn’t get to see her or hold her,” says Tiffany.

They put her in an incubator and wheeled her away.”

 

This is because Tiffany had now developed a rare and life-threatening syndrome called HELLP and was rapidly losing blood.  She lost a total of 2.3 litres of blood and her organs started showing signs of failure.  She was told to call her family, as there was a possibility she would not pull through.

Miraculously, Tiffany survived her second round of emergency surgery that day.

“I remember coming out of theatre and my Mum was there… all I could say was, I’m alive!”

The doctor then told Tiffany if she wanted to see her baby she had to stand up.

“So, I stood up!” says Tiffany. “I almost fainted, I was in so much pain, but I wanted to see my baby.”

Both Tiffany and Stevie slowly recovered together in hospital. Stevie did not need the shunt in her brain to drain fluid and three weeks into her stint in the Neonatal Unit, Stevie had her first test to measure the seizure activity… there was none.

When she was four weeks old, before she was discharged from hospital, Stevie had an MRI. It still showed unusual enlargement of one side of her brain, but doctors were baffled as she was doing everything a ‘normal’ baby should.

Tiffany and Jayden were finally able to take their baby home.

Fast forward three years and Tiffany and Stevie were sitting in the paediatrician’s room, being discharged for good from his care. Stevie was in perfect health.

“We hugged and cried happy tears that day!” says Tiffany.

“It’s a complete miracle. I believe we were both fighting to be together.”

January 24, 2022, marked Stevie-Rose’s fourth birthday.

Stevie celebrating her fourth birthday with mum Tiffany

Seeing her run around playing, it is hard to believe that Stevie once had such a serious diagnosis that Tiffany was advised to terminate.

With so many tragedies occurring in the world, it is a special thing to see such a happy ending.

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