Real Life

Our one-of-a-kind kid ‘There’s no one like Levi’

Suffering from rare disorders and unable to eat, the little lad is a real battler
Gina Fabish

When Victoria Coleman’s newborn baby was laid on her chest in hospital with news he was perfect in every way, she couldn’t have felt happier. A long and traumatic birth led her and husband Tim to fear the outcome of the 60-hour labour and emergency Caesarean. Now their healthy boy was feeding enthusiastically and bringing so much joy.

It was the only time Levi, now four, has been able to feed normally. As the night progressed, Victoria’s attempts to get her boy to drink were unsuccessful. He became mildly hypothermic and was transferred to the neonatal ward, where his stomach swelled and to the staff’s concern, he didn’t pass a bowel movement.

“What evolved was unreal, like watching a car crash in slow motion,” says Victoria, now 42, from New Plymouth.

A precious hold.

After two days, Levi and Victoria were helicoptered to Waikato Hospital, where tests revealed he had Down syndrome and a rare bowel disorder, Hirschsprung’s disease. During his month-long stay, Levi was nil by mouth for three weeks and endured several procedures, including surgery to create a stoma – an opening in his abdomen to divert waste into a colostomy bag.

“We were shocked because it was all so unexpected,” says supportive husband and doting dad Tim, 43, an IT specialist. “The pregnancy had been perfect, there was nothing to indicate Down syndrome and bowel complications would never have crossed our minds.”

After four weeks in the Neonatal Intensive Care Unit, baby Levi was allowed home with a naso-gastric feeding tube and a colostomy bag. “I was too scared to go out,” recalls Victoria, whose background is in administration.

On life support at two days old.

At five months old, further surgery was performed to remove part of Levi’s lower bowel and reverse the stoma.

“He really struggled with food orally once we’d removed the tube – it was awful,” says Victoria. “He was vomiting and screaming. I’d spend 10 hours a day trying to feed him. In the end, he was living off five teaspoons of yoghurt because that’s all he’d take. He was losing weight and we were terrified.”

Victoria requested a special peg, or mickey button, be put into his stomach, through which Levi could be fed. “That was life-changing,” she reflects. “He was nearly three then and although it didn’t fix the problem, it meant we could feed him until we’d figured out what was wrong.”

Finally, after pushing for extra tests, just before his fourth birthday, it was discovered Levi had a second rare disorder, duodenal atresia – a blockage in his bowel which, since birth, had caused him excruciating pain.

“It’s rare to have the two bowel conditions in combination, so nobody had thought to do further testing,” says Victoria. “We’ve only found 11 case reports worldwide of people with both disorders. Levi may be the only person in New Zealand.”

An operation to fix the problem at the end of last year was successful, but after such a devastating relationship with food, Levi has a food aversion. The only method of feeding him and administering medicines has remained through the mickey button, but Victoria and Tim are determined to get Levi eating orally.

The doting parents, with pup Ernie, are determined to break Levi’s food phobia.

“Food caused him pain for so long, he’s fearful around it,” tells Victoria. “There are no weaning services or recognition for complex tube-dependent children in New Zealand, so we’re working with an overseas specialist who’s a world leading expert on weaning complex children.”

The process is complicated, lengthy and expensive. “We need to get our son help to be able to eat and become as independent as possible,” says Tim. A Givealittle page has been launched to help achieve this.

Once this hurdle has been overcome, the couple – who now also have two-year-old daughter Millie – can help Levi tackle other disabilities, bowel training and also developing communication skills, as he is non-verbal.

“It’s very isolating, but you just have to keep going,” tells Victoria, who spoke to the Weekly in March for Rare Disorders Month. “Six percent of the population have rare disorders, and we wanted to speak about our experience to raise awareness and help other families to feel less alone.”

Victoria and Tim have their hands full with Levi and his little sister Millie.

To this end, they’ve also set up an online Hirschsprung’s disease support group for Kiwis.

“We are very lucky to have Levi,” says Victoria. “He’s an amazing little kid – a total joy. The medical stuff has been really hard, but he’s a cheeky little guy who loves tickles and makes everyone happy. To look at him, you would have no idea how much he has been through.”

Levi enjoys weekly swimming lessons, Riding for the Disabled, and golden retriever poodle-cross Ernie is being trained as his support dog. Since the mickey button, the wee lad’s also able to go to kindergarten and is making new friends.

“He’s inquisitive, intelligent and loves using his ipad, which could prove a great communication tool for him in future,” enthuses Victoria. “There’ve been times when we’ve felt completely broken, not knowing how we’re going to get through it all. What we’ve come to learn is that just because something’s rare doesn’t mean it’s impossible.”

Fiona Terry

To support Levi and his family, visit givealittle.co.nz/cause/please-help-levi-eat

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