Brave Mikey defies doctors’ expectations
Mikey O’Connor, 4, from Listowel, Co. Kerry, is one of just two children in Ireland who suffer from little-known but often fatal “prune belly” syndrome, a rare genetic condition that has left him without any stomach muscles and chronic kidney failure.
Doctors feared the worst when his mother Emma McGlynn underwent her first scan and warned her there was virtually no chance of him surviving the birth.
Emma and her fiance Michael O’Connor were so certain the nightmare medical prediction would come true, they even when so far as to buy a tiny white coffin and a headstone for their second child.
But Mikey astounded both his parents and doctors by not only surviving the birth, but the critical four months that followed in Crumlin Children’s Hospital, where his unusually low immune system could have proved fatal had he picked up an infection.
His doting mother said it wasn’t until he reached the age of two that she could start to have real hope for his future, as 50% of those suffering from prune belly syndrome — a condition that predominantly affects males — do not live beyond that age.
Even though a large chunk of his short life has been spent undergoing surgical procedures in Crumlin, he has astounded doctors every time by emerging stronger and edging ever closer to the normal life his parents yearn for.
And the little fighter, who Emma, 35, calls her “miracle child”, stunned his physiotherapists just months ago when he took his first steps — a massive breakthrough that wasn’t expected to happen for at least another couple of years, as he has no stomach muscle tone.
Now, Mikey, who has a “wonderful bond” with 16-year-old sister Shannon, is waiting for the all-clear for the biggest operation of his life — an intricate but life-transforming surgical operation to construct stomach muscles and raise his ribcage.
His parents Emma and Michael O’Connor said yesterday the operation, which could take place in a matter of months, will give their son the best chance of leading a normal a life as possible.
Emma said: “He’s overcome so much in his life that I’m very optimistic he’ll get through this. We call him ‘our little miracle child’ because he’s got through everything that life’s thrown at him so far.
“I never expected Mikey to live, because when I was pregnant and went for my scan, I was told he wouldn’t survive. So four days before he was born, I had his coffin and grave ordered, which was heartbreaking. Even after he was born, I didn’t think he had survived at first.
“But somehow he did and then we spent the next four months up at Crumlin, where he has had minor surgeries ever since, including his first when he was just two-weeks old.
“But I’ve never know anyone with as much fighting spirit. He has recently learnt to walk and that gave us great joy, because he wasn’t expected to do that so soon.
“The next step will be the surgery to reconstruct his stomach, but I’ve no doubt Mikey’s going to come through that.”
“He is mentally perfect and never stops talking. He is very bright and such a personality and is inseparable from his sister. I’m convinced he’ll achieve anything in life he puts his mind to, because he’s defied all the odds already.”
Meanwhile, grateful Emma is shaving her hair off in a charity event at Christy’s Well bar in her hometown of Listowel next Saturday to raise money for Crumlin Children’s Hospital.
“The doctors at Crumlin have saved my child’s life, so I just want to give something back by raising as much money as I can to help the other sick children there.”
