'I thought my toddler had hay fever, but he was nearly in kidney failure'

On the day Jonah Lomu died I sat at my kitchen counter and sobbed into my cup of tea. You're probably thinking I'm a die-hard rugby fan, but the truth is I knew very little of him or his sport, it was the cause of his death that hit too close to home.

My second child, Lachie, was just two-years-old, when I endured the most terrifying experience of my life. My little boy woke up with puffy eyes and I assumed he had hay fever. A few days later, when I struggled to lift him up onto a slide I figured I was feeding him too much. And, when he pleaded to go back to bed 10 minutes after he woke up, I thought he must be having a growth spurt.

There was no temperature, no rash, no wheezing. These "symptoms" just seemed too trivial set off alarm bells.

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It wasn't until we visited my sister-in-law that I realised something was seriously wrong. She hadn't seen Lachie for a few months and when she laid her eyes on this sleepy, rather massive boy she was shocked.

'Get him to hospital immediately'?

?She insisted that I take him straight to the doctor. Our GP took one look at him, particularly his swollen belly (something else I hadn't noticed up until this point), and said five words that still make me shudder: "Get him to hospital immediately".

Perhaps it was the seriousness in his tone, or maybe it dawned on me that these "symptoms" were actually so odd for a toddler, that suddenly I was terrified.

"Our GP took one look at him and said five words that still make me shudder."?

My hands shook uncontrollably as I left my four-year-old daughter and five-month-old baby at home with my husband and rushed Lachie to the emergency department. I could hardly breathe as the medical staff poked his baby arm with needles to draw blood, struggling to find a vein amongst all the puffiness. A few hours later we got the results.

Lachie had nephrotic syndrome, a disease of the kidneys and the same illness that claimed the life of the talented Kiwi rugby star at the tender age of 40.

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Lachie was given high doses of prednisone, the same steroid given to asthma sufferers but much stronger, in the hope it would help the kidneys and send the disease into remission. All the while, I was trying to breastfeed my baby who wasn't allowed to stay at the hospital as Lachie's immune system was now suppressed from the medication.

When a child develops nephrotic syndrome, the kidneys stop filtering the protein found in the bloodstream so they end up escaping into the urine. With no proteins, the blood can't hold onto water and it releases that water into the rest of the body causing swelling.

The next three years were the darkest of my life.

Within a day or two of being in hospital, Lachie was so puffy he was hard to recognise.

Gravity had taken its toll and Lachie's ankles had been transformed into cankles and, much to my husband's horror, his scrotum and penis became so huge that he could hardly walk. Finally, after seven days the steroids kicked in and he went into remission.

The swelling went down and he was allowed to head home.

Lachie had never been a textbook baby. At 10-days-old , he went to hospital with a fever and, from then on, he was constantly colicky and prone to colds. It probably didn't help that I was a neurotic mum, taking him to the GP at the slightest hint of a snuffly nose.

So it's ironic that I didn't take him to the doctor when I really needed to.

The next three years were the darkest of my life. Lachie struggled with the steroids and would relapse constantly. He had no energy, he couldn't mingle with other kids due to his compromised immune system and, even when he wasn't having a relapse, he always had a strange tone to his skin.

I'm not the only parent who has been traumatised by this disease.

Jack Martin was three when his mother, Katie, noticed he was getting puffy around the eyes. She took him to the GP who told her it was allergies and gave him antihistamines. When it didn't clear up, she started to get worried.

"We noticed that he was also starting to retain a bit of fluid in his feet, legs and eventually his stomach". Yet despite her misgivings, the GP still insisted it was allergies. They finally got a second opinion and Jack was sent to a paediatrician who then sent him straight to the emergency ward.

"When I heard it was something to do with his kidneys, I immediately thought the worst. I was in tears," Katie recalls. "We were told that if he had not been treated soon, he would have gone into kidney failure". Like Lachie, Jack was put on prednisone but struggled to stop having relapses.

Since his diagnosis eight years ago, Jack has been on various medications to try to get his condition under control. "We had to accept that this would be a longer-term disorder and it would not resolve quickly", says Katie. "Jack is now 12 and, while he hasn't outgrown it yet, we hope it's only a matter of time."

Nephrotic syndrome in kids

Why Lachie and Jack got nephrotic syndrome is a mystery. According to the Royal Children's Hospital in Melbourne, there is no known cause, so it could happen to anyone.
It usually starts when a child is between the age of two and five and affects boys more often than girls.

Unlike Jonah Lomu, who got nephrotic syndrome as an adult, getting the condition as a child means there will most likely be a full recovery by puberty.

"For the vast majority (of children) the outcome is good", says Australian paediatrician Dr Scott Blundell, who specialises in renal disorders. "Unfortunately a very, very small number go on to need dialysis and a kidney transplant".

I came into the room and found him in the foetal position, lying in a pool of vomit.

While the syndrome is fairly rare, with about one in 50,000 children diagnosed annually worldwide, Blundell says he gets about three children presenting at his clinic with neuphrotic syndrome each year.

"Many of them only ever have one episode," he explains. "Some have a number of relapses before outgrowing it".

For Lachie, things took a dangerous turn one evening when he was five. I came into the room and found him in the foetal position, lying in a pool of vomit. I took him to our local hospital where he was immediately transported by ambulance to the Brisbane Children's Hospital. It turns out his sodium levels were dangerously low.

For the next seven days he sat hooked up to a machine for over five hours each day getting albumen infusions (a blood protein). This is something the doctors told me would have to happen every few days if the steroids didn't work.

While this experience was extremely traumatic, something good did come of it. Lachie got approval from the Health Department to start using a different drug, a pill originally developed as a de-worming tablet for dogs (go figure!).

Lachie started taking the new treatment daily and within months his episodes grew milder and eventually stopped altogether. He has now been in remission for five years and is a happy, healthy 10-year-old who loves Nippers and AFL.

If you suspect your child has nephrotic syndrome, Blundell suggests you should take your child to a doctor immediately to get blood tests done as symptoms are often hard to spot.

"The most usual place this starts is around the eyes, and it is often mistaken for an allergy or an infection," Blundell advises. "The best place to check is above the ankles. If you press your thumb for a few seconds over the shin bone just above the ankle, it will leave a dent".

While nephrotic syndrome is not often fatal, it can lead to serious complications.

"Kids with nephrotic syndrome are at risk of blood clots and infections during an episode," adds Blundell. "That is because some of the proteins that protect them against blood clots and fight infections are lost in their urine".

Caroline von Bibra is a mum-of-four, journalist and author of the Children's book AFL Dreams. You can find out more on her website and follow her on Instagram.

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