‘I can’t turn back the clock’ – Blake’s mum laments tube de­ci­sion

The Courier & Advertiser (Angus and The Mearns Edition) - - News -

The mother of a child with a rare con­di­tion has said if she had known surgery would al­most kill her son, she would never have gone ahead with it.

Blake McMil­lan, five, from Carnoustie, suf­fers from MECP2 du­pli­ca­tion syn­drome and can­not walk, talk or eat.

He had an op­er­a­tion at the Royal Hospi­tal for Sick Chil­dren in Ed­in­burgh last month to in­stall a feed­ing port so he could be fed via a tube into his stom­ach.

It meant tubes could be re­moved from Blake’s face, but just hours af­ter the suc­cess­ful op­er­a­tion, doc­tors found the ma­jor­ity of his large bowel was necrotic.

His mum Jenny, 40, was told her son would die if they did not op­er­ate to re­move the or­gan.

The surgery was a suc­cess and Blake was last week trans­ferred to Ninewells Hospi­tal.

It is now hoped he can re­turn home later this week for the first time in a month since the orig­i­nal op­er­a­tion.

Jenny said: “He is still get­ting IV flu­ids and feed and we need to get his feed lev­els back to nor­mal be­fore he can go home be­cause we need to make sure he can cope first.

“At the mo­ment he is cop­ing with the level he is at right now, so hope­fully that con­tin­ues as it goes up.

“I’m liv­ing at Ninewells and the ac­com­mo­da­tion here is fan­tas­tic.

“It’s such a nice place but I can’t wait to get back to nor­mal.

“I ac­tu­ally stayed at home with my daugh­ter the other day, just for the one night, and it felt weird.

“I couldn’t set­tle be­cause I had to set off early to go and see Blake again.

“Just get­ting used to a rou­tine again and get­ting back to nor­mal will be a re­lief.

“It’s nice to see Blake’s face is clear now, but when you lift the cov­ers and see his body, it’s quite a mess. “But I can’t turn back the clock. “If I had known then what I know now then I would have just left the tubes on his face.

“He has dif­fer­ent things on his body now that need at­ten­tion, such as wound clean­ing and chang­ing his stoma bag.”

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.