Long road ahead for Killaloe toddler

A KILLALOE toddler, who has already had numerous major operations including open-heart surgery, is now facing the prospect of a kidney operation because of a rare disease.

At just 17 months, Jayden Conway has spent over one-third of his life receiving treatment for Focal Segmental Glomerulosclerosis (FSGS) in Our Lady’s Hospital for Sick Children, Crumlin and the Mid-Western Hospital, Limerick.
FSGS is a disease that attacks the kidney’s filtering system and is one of the many causes of Nephrotic Syndrome, which occurs when protein in the blood leaks into the urine. To date, there is no effective treatment for FSGS and, barring an unexpected breakthrough, it is likely that Jayden will need at least one new kidney.
His parents, Nuala Conway (25) and Charlie Wood (26), are on a constant rollercoaster of highs and lows from spending months in surgical departments and treatment rooms. They have to remain alert on a 24-hour-basis because of the possibility of a sudden deterioration in Jayden’s condition.
Born on November 18, 2008, a murmur was first detected in Jayden’s heart following a spell in the intensive care unit. Tests at Our Lady’s Children’s Hospital in Crumlin revealed he had pulmonary stenosis, a tightening of the pulmonary valve. He underwent a balloon valvuloplasty to try to free out the valve but when it was unsuccessful, Jayden was back in Crumlin a week later for open-heart surgery. Following the complicated procedure, Jayden began a steady recovery and was sent home to Killaloe nine days later.
However, for six months after the heart surgery, Jayden didn’t smile and was cross and irritable, which his mum put down to him still being tender and sore.
In early September 2009, however, Nuala became concerned when Jayden’s eyes and stomach started swelling. When Nephrotic Syndrome was diagnosed, Jayden was put on steroids before being transferred for more intensive tests at the nephrology department of Our Lady’s Hospital.
A renal biopsy confirmed he had FSGS. It was a huge shock for his parents, who were confronted with yet another debilitating condition for their child, who had still to reach his first birthday. Jayden required treatment for two months in Crumlin and returned home on November 9, nine days before he turned one year old.
Nuala explained that Jayden loses albumin, a type of protein, through his kidneys, which results in scarring. She says over 30% of his kidneys are already destroyed but she hopes he will be three or four years old before he needs a kidney transplant.
“Dr Mary Waldron, the consultant paediatric nephrologist and Dr Michael Riardon in the nephrology ward made us feel at ease in Crumlin hospital. Dr Waldron was a lifesaver. She spent hours explaining what problems Jayden had to overcome with his heart and kidneys. FSGS is very rare and we never met anyone else with his condition.
“Once Jayden got his diagnosis of FSGS, he started to improve. However, we have been constantly in and out of hospital. It now looks as if he will need a kidney transplant and will need dialysis for a year or more. He may require more open-heart surgery to put in another valve in his heart when he is 10 years old,” Nuala added.
His parents hope he will get another 10 years out of that valve and are ever hopeful that new technology will come into play when he is older. He requires albumin infusions lasting four hours every Monday and Thursday to keep his kidneys functioning properly, which also affects his immune system, so vaccinations are a must.
Jayden’s condition is complicated by the fact he has difficulty in retaining the albumin once he is infused, which results in regular bouts of sickness that can be difficult to manage and requires constant supervision.
Nuala says one of Jayden’s kidneys may have to be removed before dialysis but if his albumin levels don’t increase, the kidney transplant will fail. “When it comes to albumin, we are damned if we give it to him and damned if we don’t. He needs the albumin to stay healthy but because he is excreting so much, it is damaging his kidneys. It is a lesser of two evils,” she explains.
While their families and friends are very supportive, Nuala said she wouldn’t feel comfortable leaving Jayden with anyone else to take a break because of his medicine regime and having to look out for the signs of his illness.
“We are constantly on alert because Jayden could have to go into hospital at any time. Your life stops but we don’t think of that, we just want to do our best for Jayden and give him the best chance we can in life.
“He can’t get certain vaccinations because it could kill him. Most children who get a bug would be able to clear it in 24 hours but Jayden could have it for three or four months. He hasn’t got the antibodies to fight every cold or ’flu. When he gets a cough, you have to analyse whether it is a cough or a ’flu. If he gets a bump in the head, you worry about the possibility of a blood clot. FSGS could return in the new kidney but hopefully, this will not happen,” she noted.
Acknowledging the care he has already received in Crumlin and the paediatric ward in Limerick, Nuala and Charlie decided to make bracelets and cards with a synopsis of Jayden’s story to help raise awareness of FSGS and fundraise for the nephrology ward. Their efforts have already raised €600 and are available from their Facebook page called Jayden’s Journey Wristbands.