by Mary O’Connor, Galway Advertiser
Evan Hoban’s family liked Mr. John Russell from their first meeting. The consultant paediatric ear, nose and throat surgeon at Our Lady’s Children’s Hospital in Dublin was warm, kind, caring and great fun.
And the family has reason to be grateful to him, he saved the life of their little boy on two occasions. Since he was born, the now nine-year-old has seen a lot of Mr. Russell as he has attended Ireland’s largest paediatric hospital on many occasions.
“Mr Russell is an amazing man and he has been so good to us,” says Evan’s mother, Aoife Kavanagh, a nurse who lives in Devon Park, Salthill. “He and his team are so supportive. When Evan had surgery he would come in to see him twice a day some days and at the weekend”.
She says they owe him a debt of gratitude and had hoped to acknowledge the fact when Evan was chosen by the hospital to be a guest on the Late Late Toy Show where he met rugby hero Jamie Heaslip last year. But he did not get the time to talk about his favourite surgeon so she hopes that by mentioning him now, they can in some way, recognise the enormous contribution he has made to their little boy’s health.
Evan first attended the children’s hospital when he was one day old on May 1 2007. He had heart problems initially.
“For the first eight weeks of his life we knew that something was wrong,” says his mum, Aoife. “He was in and out of the paediatric unit at UHG a lot. We used to find it difficult to wake him, he was unable to feed and he used to stop breathing. I knew that something was not right.
“When he was eight weeks old he was sent for a simple scope of his airway in Crumlin. They discovered that Evan had an airway the size of a pin that you would find on a new shirt!”
He had to have an emergency tracheostomy (whereby a tube is inserted into one’s windpipe to open the restricted airway and enable breathing) inserted and he family spent three months with him in the Dublin hospital.
“We had to learn how to care for him. The tube became the norm for him for nearly four years. We had a three-year-old daughter at the time and life was very much disrupted.”
The Hobans were blessed with “amazing family support”, she says. “We brought Evan home but had to fight for a homecare package to provide nursing care at night so we could get some sleep. He needed to be suctioned nearly every five minutes when he was a baby and had to use nebulisers on an ongoing basis, I cared for him during the day until nurses came at 11pm. We had regular visits to Crumlin and Mr. Russell and his airway team were an amazing support.” Aoife, who is originally from Claregalway, describes the two specialist airway nurses, who were always only a phone call away, as being “like our right hands”. “They would come down here and see us.”
Evan was unable to eat and needed a peg tube to feed him. “He had such severe reflux he had to be gravity fed 40mls every hour – this was the only way he gained weight. This was a painstaking time. He had a peg till he was five Again, the dieticians and speech and language team in Crumlin were amazing.”
Just as Aoife and her husband, Brian, who is also a nurse, were managing Evan;s illness they got another blow. When their little boy was two-and-a-half years of age they were told he had a very rare chromosomal disorder called “16q deletion”. The diagnosis as like the death of a child, she says.
“for us this was very hard as we were dealing with so many medical issues and now this was a whole different area,” says the mother of three, Kate (13), Evan (9) and Carl (4). “Noboby knows much about 16q deletion, it means a part of Evan’s chromosome 16 is absent and this is the reason he has so many medical issues. The condition affects his body in many ways, he has problems with his eyes, feet, muscles, and joints. He has had pneumonia many times.”
He was having major difficulty breathing in July and was told at UHG that he had narrowing in his airway. “It was back to Crumlin again to find out that he needed a major operation to remove part of his trachea…this occurred as a side effect of his long-term use of the tracheotomy tube. He had a six hour surgery under Mr Russell who was amazing once again and saved his life. He came in every day, sometimes twice a day and at the weekend. We had such fun with him, he is a massive Leinster fan and we had a huge Connacht flag around Evan. We call him our hero. Thank God for Crumlin Hospital. Evan had to stay there for a few weeks but made a great recovery.”
She describes her son as a happy-go-lucky child who has always been a great patient. “He goes up and down to Crumlin for different appointments – he is now being treated for juvenile arthritis and has Raynaud’s disease.which is a circulation disorder. These all cause pain.”
Yet he smiles through it all and brightens everyone’s day. “He is amazing, he has a mild learning difficulty so he is not on the same level as other nine-year-olds. He would not be as savvy as his peers but he attends a mainstream school. Initially, we were told he will not be able to do so many things and we try hard to help him lead a normal life with all his difficulties.”
His parents worry about him a lot. They worry about how he will fare at school, if he will be included in playground games, if he will have friends, how his future will turn out. But at the back of their minds is a strong conviction that this courageous and cheerful little boy will get through whatever challenges he encounters.
“We are great fighter for him,” says Aoife. “He is probably the bravest nine-year-old we know.”
Fundraiser for Our Lady’s Children’s Hospital in Crumlin
A major annual fundraising initiative, which raises vital cash for Our Lady’s Children’s Hospital in Crumlin, will take place at the Galway Golf Club on Friday April 28.
The West of Ireland Golf Classic, which will take place at Galway Golf Club, will start with a brunch sponsored by Zurich Life from 12 noon to 1pm and the main event will begin at 1.30pm. Dinner, followed by an auction, raffle and the presentation of prizes will take place at 7pm. The auction will include two tickets for Chelsea’s opening home fixture of the 2017/2018 season, including flights, one night’s accommodation and pre-match hospitality sponsored by O’Neill and Brennan Construction Recruitment, as well as Connacht Rugby family season tickets. The cost per team if €600.
The event will raise funds for the Children’s Medical and Research Foundation at Crumlin Hospital and the Neo Natal Intensive Care Unit of University Hospital Galway.
The golf classic raised €22,000 last year from participating teams, sponsorship, donations, an auction and raffle with €15,500 going to Crumlin and 6,500 to the Patient Comfort Fund of the Neo Natal Intensive Care Unit at UHG.
The focus of attention again this year is on improving the quality of life for both children and parents, according to John McGinley, the chairperson of the event’s organising committee.
“A total of 130,000 patients go through Crumlin annually with 80,000 utilising the out patients department,” he says. “The number of patients going through outpatients includes some 1,800 from County Galway.
“This event after 30 years in existence continues to make a significant and practical contribution to the welfare of sick children. We are particularly appreciative of the generous support provided by our many sponsors, donors, and participants over the years. The local organising committee operate on an entirely voluntary basis and expenses are kept to ‘essentials only’ to ensure maximum benefit from the event.”
For further information telephone John McGinley at (087) 2885585 or Don Colleran at (087) 2454665