Love It! October 27 2009

MY WATER BABY

Claire Merenda told us her tale of how her baby son swelled up like a water balloon due to a rare and unexplained kidney condition. Little Reece had nephrotic syndrome and his tummy swelled up to 30 inches! Luckily he has now recovered. Hopefully his story will lead to more children being diagnosed quicker in future.

Claire and husband Matthew, also 31, gave birth to their first son Reece in October 2005. Despite a difficult birth Reece seemed healthy until just after his second birthday.

In March 2008 Reece woke up one morning and his eyes were all swollen. Claire gave him kiddie Piriton but the following morning he awoke and not only his eyes but also his legs and face had swollen too.

They took Reece to hospital where he was put on a nebulizer and given Pirition and sent home. But the following day Reece was even worse. He could not even open his eyes and he was in pain. Claire decided to take him to her GP who she was sure would realise Reece was not having an allergic reaction.

As soon as the GP laid eyes on little swollen Reece he sent them direct to hospital. Once there they had to put a canular on him – Claire had to hold her little boy down, screaming and hysterical, while doctors did this. Tests were done immediately and revealed Reece was suffering from nephritic syndrome, a condition of the kidneys that is extremely rare and currently has no cure.

Doctors had to administer steroids very quickly but warned Claire and Matthew it would take days for them to begin to work. Little Reece would get much worse before he got better. Over the following days Reece continued to swell. In four days he went from 14 kgs to 18 because of all the water that was building up in his system.

As the days went by his pain increased and Claire and Matthew stood helpless as their little boy howled in pain constantly. Claire and Matthew – furious they had been sent home in the first instance without even a urine sample being taken, were distraught. Even the doctors shed tears when they heard little Reece’s cries of agony. His little body swelled so his stomach measured 30 INCHES.

 Then finally on the tenth day Reece’s nappy was full of water. The steroids had begun to work and he was finally able to wee. Slowly his body returned to normal and Claire and Matthew breathed a sigh of relief – Claire was also six months pregnant throughout this entire episode which added to the stress and strain of Reece’s condition.

They were told nephrotic syndrome is a condition of the kidneys meaning the blood leaks protein into the urine. Far too often, as with little Reece, the warning signs are passed off as an allergy and the child can then have kidney failure which can even be fatal.

Claire now has to test Reece’s urine every single day. If the levels show dangerous, she has to take Reece back into hospital. He is almost permanently on steroids which have every mother’s favourite side effects of:

Very Severe Insomnia

Severe Hyperactivy

Bad mood swings

High Blood Pressure

Aggressiveness

Behavioural Issues

Sensitive

Frustration

Brittle Bones and Muscle Wastage causing pain

"Moon" face

increase appetite and weight gain

Translucent Skin

 But perhaps the saving grace is Reece, now three, own attitude to it. He will look at pictures of himself and say that was when he was ‘fat Reece!’.

He understands his condition makes him become ‘fat Reece’ and is slowly coming to terms with the syndrome for which there is currently no cure. Any publicity could be invaluable in helping others recognise the disorder and in helping funding for research.