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A story about the need for children’s lung specialists in Saskatchewan
June 29. 2009
My name is Julie Gareau and I am writing to you in regards to the Saskatchewan Paediatric Respiratory Medicine Review that was conducted by Dr. Joe Reisman on behalf Lung Association of the Saskatchewan. I am a Saskatchewan citizen that resides in rural Saskatchewan. I am also a concerned parent. Within this letter I would like to tell you my story and discuss the lack of paediatric specialists within this province.
In short, my family’s story begins in October 2008 when our son Jackson was born premature, at 26 weeks, in Calgary. He was born in Calgary because Regina General Hospital (which we were emergency rushed to) had no space in their NICU for us. The first four and a half months of Jackson’s life were spent in four different hospitals in three different cities. Jackson was a patient at Foot Hills Medical Centre, Regina General Hospital, Alberta Children’s Hospital, and The Royal University Hospital. After two months of being on a ventilator Jackson’s trachea was extremely swollen and scarred. He was transported to the Alberta Children’s Hospital for a bronchoscopy and laryngoscopy, both procedures are not available to children in Saskatchewan. The surgeon concluded that Jackson’s airway was the size of a pen ink refill and he would have to have a tracheotomy. My husband and I were devastated at this news.
Jackson stayed at the Alberta Children’s Hospital for three weeks mostly in the ICU. On January 7th he was transported to The Royal University Hospital in Saskatoon. My husband and I requested the University Hospital because this is where the only Paediatric Respiratory Specialist resides. We felt there was no point going back to Regina where there are no specialists to care for Jackson. Jackson spent a month and a half in Saskatoon before we could take him home.
Currently Jackson is under the care of Dr. Lothian at The Royal University Hospital, Dr. DiBartolo, a respirologist, and Dr. Brooks an ENT surgeon both of which are at the Alberta Children’s Hospital in Calgary. Jackson sees Dr. Lothian once every few months for follow up. We also travel to Calgary every three to four months for surgery. The surgery that Jackson requires is not available in Saskatchewan and we are an eleven hour drive away. We have to split our drive over two days and have to pay for hotels along the way because the trip is far too long for Jackson to endure in one day. The drive to Saskatoon is five hours with Jackson but this is less than half the time it takes us to get to Calgary.
Our concern is that if Dr. Lothian seeks employment elsewhere we will have to travel to Calgary more often. Currently there is no help from the government for expenses with medical travel. I know when I was transported to Calgary while pregnant we were reimbursed for our expenses because there was no room for Jackson in the NICU. I phoned to ask if we would receive any help when Jackson went to Calgary for a tracheostomy and I was told that because it is a service that Saskatchewan does not offer there is no help with expenses. This is very frustrating and stressful because not only are we worried about the health of our child, we also have to worry about money. This is why we need to bring more paediatric specialists to Saskatchewan. This would help alleviate worries about money and the stress of driving long distances with young children.
The review that Dr. Joe Reisman conducted states that Saskatchewan is lacking paediatric respiratory specialists. For the population of Saskatchewan there should be at least three. Currently we have .5. At the Alberta Children’s Hospital alone there is five paediatric respirologists. I would like to know what the plan is to recruit more paediatric specialists with a subspecialty in respirology as well as other subspecialties like ENT surgeons that can successfully work on small children and infants? It is not fair for our children, the children of tax paying citizens, to be shipped out of province away from their support systems.
The lack of health care for our children is why we desperately need a children’s hospital. The planning and building of a new children’s hospital is to be started in the near future. My question is what good will a brand new facility do without the staff to fill it. If there are not doctors with subspecialties, nursing staff, and medical staff to run the hospital then there is no point in having a children’s hospital because our children will still be sent out of province for procedures. I feel that if there is a plan to bring and keep specialities in Saskatchewan, especially Saskatoon, then the Government in the long run would save money. When Jackson was a patient at the Alberta Children’s Hospital my husband phoned the Calgary Health Region and he was told that for ten days in the ICU the bill was already $90 000. Jackson spent nineteen days at the Children’s hospital and seventeen of those days he was in the ICU. So for argument sake let’s say that everyday Jackson was in ICU it cost $9 000, so for seventeen days Saskatchewan Health paid the Calgary Health region $153 000 plus Jackson spent two days on the regular ward. Also, Jackson spent eight days in the Foot Hills Medical Centre NICU, and had four air ambulance rides. So instead of having the facilities here at home our tax money is given to a health region out of province. I wonder how much money is paid to out of province hospitals for our children like Jackson.
Jackson is only one child in Saskatchewan who needs the care of a paediatric respiratory specialist. We are only one family of many who will be affected if Dr. Lothian leaves this province. There are many children in this province that are suffering from the lack of expertise. There are many children with serious illness that would benefit from having in province care.
I would like to ask you to put yourself in our situation, and the situations of all the families that deal with a sick child. We, as parents, are under incredible emotional and financial stress. All we want as parents is to see our children have the best care possible. Currently, in Saskatchewan, I feel that our child is receiving second rate health care in the province that created health care. The facilities and equipment are out of date and there is a lack of paediatric regular ward, ICU, and NICU beds. I feel that the health system has failed in my son’s care and he deserves much better.
I hope that you consider the grave situation that our children’s health care will be in if specialists continue to leave the province. You can’t expect a general physician who does not have the training and expertise to handle the specialized care of our sick children. In a province that apparently hasn’t been affected by the recession there should be the resources to build the best Children’s Hospital and recruit and keep paediatric specialists. My son, your children, and all of the children in Saskatchewan deserve to have the best health care available.
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