Chicago Hope!
Thursday, 11 September 2008
Katie with Prof Dr Nordli in Chicago.
A BABY'S first birthday is always a special day for a family, but for the parents of Magherafelt baby Katie Maguire the day had a special resonance.
Diagnosed with cerebal palsy and intractable epilepsy many feared the child wouldn't make it to this tender age.
Gary McCann and Mekila Maguire celebrated their child's birthday in Chicago Children's Memorial Hospital were she is receiving continued treatment for her afflictions.
Katie Maguire was born on September 1, 2007, six weeks premature due to Mekila suffering a placenta abruption. Needing 24hr supervision Katie has spent most of her life in Hospital rooms.
Doctors here believed that Katie's conditions were uncontrollable and advised parents Gary and Mikela to make the most of their time with their child, but with money raised by the general public they managed to get Katie to America for private treatment.
And while it is still early days, the future is full of promise for the young family.
“Well, it has been truly amazing." Gary comments from Chicago, "Eight weeks ago we travelled here full of hope and expectation for Katie's future. Katie's first procedure was to receive a 24hour video EEG to determine the extent of her seizure activity. When this was completed we met with Prof Dr Nordli who explained that Katie had a significant problem underlying her frequent seizure."
Unfortunately for baby Katie and her parents, U.S doctors have also uncovered more ailments previously unseen by Northern Irish doctors, as Gary explained:
“Firstly, he needed to do more studies on Katie's feeding. Over the following two days of investigation and biopsy, Katie required to be heavily sedated. At the conclusion, it was shown that Katie's stomach did not lie in the normal vertical position but horizontally beneath Katie's ribs. Her airways and voice box were extensively damaged due to her severe reflux of the acid in her stomach. This regurgitated acid had been burning her throat and gullet all along. This explains why Katie lost the ability to shout and make normal baby noises. "None of this had ever been tested, even though we had asked our NHS doctors on numerous occasions for the investigations to be carried out. We were always told that there was no underlying problem and that we must accept their decisions without further questioning.
“A few days after we had Katie's tests, we were referred to a top paediatric surgeon, Dr Cathy Bareness. She sat down with us and explained everything about the operation and how, to begin with, she was going to reconstruct Katie's stomach. She told us she would then fit a G tube into Katie's tummy. This is to feed Katie comfortably until she gets her extensive physiotherapy at the Pathway Centre, which should enable her to eat enough by mouth. Hopefully, the G tube can eventually be removed.
“The surgery itself took a gruelling two and a half hours. These disorders of the throat, gullet and stomach are something that should have been discovered and treated at home by the NHS. These operations generated extra bills that we did not expect to have to pay. They may cost us anything up to$100,000.
“`We had frequently asked the doctors in Northern Ireland, whether Katie was in pain. We were repeatedly reassured by our doctors that she was not in pain. This was entirely wrong. We now know from the US doctors that she had been suffering considerable pain from birth.
“24hrs after the operation, Katie was feeding comfortably. Her seizures have reduced by 50 percent. As a consequence her medications have been reduced. At last, we now have a baby girl who can smile again and who responds to our voices. On the first of September, her first birthday, Katie reached a milestone which we were afraid we would never see. With her new treatments at the hands of experienced and able doctors in Chicago, we have every faith that our daughter will see so many more.
“There are still more tests to be carried out. Currently, we are awaiting a new date for Katie's MEG scan. This will finally give us the clearest and most detailed picture of Katie's brain condition. Hopefully this will show that Katie's seizures may be prevented all together by surgery to her brain."
A spokesperson for the Northern Health and Social Care Trust declined to comment.
