PLEASE HELP CARLY!

We have a beautiful, funny and smart 12 year old daughter named Carly. She has been through much since the day she was born flat lined in March 1996. I have had many health problems through my life (Crohn's Disease with many surgeries for abcesses, resting my bowels, feedings by a catheter placed above my heart instead of eating called Total Parenteral Nutrition, surgery for ovarian cysts, gall and kidney stones with Lithotripsy) but the most scary was when I was 28 weeks pregnant with Carly (I had a test and was told I could never have children!) and my liver and kidneys started to shut down. After a few days of waiting in Lions Gate Hospital, I was moved to Royal Columbian and had an emergency C-section at 29 weeks.

Carly was a fighter from the beginning. We were told she would be in the Neonatal ICU for 8 weeks or more but she was home in 5! We found out she had Cerebral Palsy (luckily milder than a lot) vision problems and Epilepsy but despite all of this, she is a healthy happy girl.

In May 2000, Carly's Orthopedic Specialist thought Carly should have some Botox injections because of her Cerebral Palsy and Spastic Hemaplegia. Our physiotherapist did not think this was a good idea and we went to British Columbia Children's Hospital to get a second opinion.
We decided to stay at BCCH as all of Carlys other doctors were there and this Specialist was highly recommended.

On Carly's last visit to the old Specialist, it was noted in her files that her spine remains straight and did in many of the earlier ones also.

Carly first started to walk during her transition over to BCCH and we would ask him why she leaned to the side and dragged her right foot so badly she needed a new pair of shoes every few months. We asked him if we should do X-rays as in the past with her old Specialist. He said No she didn't need X-rays as it was just her Cerebral Palsy causing the weakness on her right side and not wanting to expose Carly to radiation if it was unnessessary, we agreed.

In September 2003, the Specialist was doing his ususal check up on Carly and said to an assistant "Do you see the bend or crease in her side?" We could not believe this as this is what we had been pointing out to him at each visit. He turned to me and asked "When was the last time you had an X-ray done on Carly?" Again unbelievable since we had been asking him this at each visit. I told him he had never sent Carly for an X-ray and we were immediately sent across the hall to have one done.

We came back to the examining room and the X-ray was put up on the light screen. My heart felt like it was going to explode. Before anything was said, we could see there was a horrific problem with Carly's spine.

We were told that Carly had Scoliosis (a curve in her spine) at 70 degrees and to come back in three months or so to see if anything had changed. We dropped Carly back at school, started questioning what exactly had gone on and went back to Children's Hospital to make a complaint with the President - Sharon Toohey.

My husband and I looked up Scoliosis on the internet that night and found out that Carly was 20 degrees away from where her spine could start to damage her internal organs and she was 20 degrees over what is considered a surgery candidate.

We also found out that young girls with Cerebral Palsy are way more likely to get Scoliosis than any other group and that leaning to the side or having a crease is a red flag for any doctor to look for Scoliosis.

We phoned Carly's new Physiotherapist who took over when she started Elementary School and said we would not wait 3 months or so to "see what happens" but wanted something done immediately. She was seeing the Specialist the next day with another patient and said she would get a prescription for a back brace for Carly to wear 22 hours a day. Carly was soon casted and began the bracing. She was 7 years old.

In 2005, my father and Carly were walking through Lynn Valley Mall and were approached by a man who said he could see Carly was having a hard time walking and seemed uncomfortable. He said he was from The Shriner's Organization and said they might be able to help. He gave my father his card which my Dad then gave to us.

We thought about it for a bit and decided that it couldn't hurt to see if they could help Carly so phoned him and he came over with papers to sign He said Carly might not be chosen right away but he would see what he could do. He then asked us about Carly's Gait Lab. We stared at him blankly. He told us that it was a procedure done with sensors placed all over children's bodies (at all joints, shoulders,arms, legs etc.) to show how they held their bodies as they walked. He said there was one at Sunny Hill Health Centre for Children which Carly has been to many times for other reasons but no one told us about the Gait Lab.

 We found later that our Specialist has been the Head Director of the Gait Lab at Sunny Hill since it opened in 1997 (the year after Carly was born) and he personally picks the children who need it. He had always pointed out to us what a strange gait Carly has as her right leg and foot twist outwards instead of in like most kids (pigeon toed) but we were never given the option or even told about the Gait Lab by him. It could have showed that her back was way out of line.

Carly was chosen right away to go to The Shriner's Orthopedic Hospital in Portland Oregon and had her Gait Lab done there (and 8 hour bus trip away instead of 20 minutes away from our house.) The Orthopedic Specialist there told us on the first visit that if a child had been brought in in the condition Carly was in and a few years older he would recommend surgery right away but since once the spine is fused above and below the curve the spine does not grow anymore, he thought the best option was to do more back bracing on Carly as she grew. Both doctors (here and Portland) agreed on bracing as the best choice for Carly.
We never told Children's Hospital that we were leaving them. In fact after the first few visits down to Portland, we had another 2 appointments with our Specialist at BCCH to let Children's know what was happening with Carly. We only asked that her X-rays, MRI's etc be sent down so they could see what had been happening to her spine over the years.

In December 2006, it was decided that Carly needed more agressive back castings done under General Anesthetic and worn 24 hours a day for 6 weeks at a time. She also had a tibial rotation (they cut the lower bone in your leg in half, turn her leg inward more then place metal rods to hold it in place.) This was done in January 2007 and we were told she would have 6 weeks in a non weight bearing leg cast, 6 weeks of Physiotherapy and then her right leg would be in a much better position. Unfortuantely it didn't work out well - her foot and leg point inward a bit better but it took Carly over a year to get her confidence back in walking and she is still nervous about stairs etc ( which we have about 25 up to our apartment) to this day.

We went down to Portland in February 2007 for Carly's first back casting. We were phoned at the hotel early in the morning and were told her doctor was extremely ill and all his surgeries and appointments would be cancelled until further notice.

We called the Shriners immediately to say we needed to get home but could not until the next bus went home. We spent 3 more days in Portland with Carly in a wheelchair from her leg operation until we could go home.

We went down just before Carly's 11th  birthday to have the first casting done, then another in May and in June we had them make a back brace under General Anesthetic so that Carly could at least take it off for 2 hours to have a bath and cool off during the summer months.

On our way home in June, our bus broke down for 4 hours in Washington State. We had spoken to other parents who had been in similar situations also. We saw The Shriner's on T.V. asking the Provincial Government for money to either fix their ailing buses or buy new ones. They were declined.

We began to feel uncomfortable about doing Carly's extremely dangerous surgery in Portland then putting her on a bus 4 to 6 days after surgery for an 8 hour trip home (or more if it broke down).  He told us Carly needed surgery soon in September 2007. He said spring to early summer 2008.

We called Carly's first Orthopedic Specialist and asked him about Carly's  problems and he gave us the name of a specialist he knew who specializes in Pediatric Scoliosis Surgery. We had a hard time getting a hold of him then found out that  was because he was moving his practice to Children's Hospital.

We made and appointment to see him in October and he did an examination on Carly, looked at her last X-ray done in Portland in September and agreed that Carly needed surgery soon. He told us though that there was a 2 year wait list for surgery at Children's Hospital. We asked him to be Carly's doctor and he agreed and we set up another meeting for February 2008.

I phoned The President of the hospital to ask more about Carly's case and we never heard anything back.

The only thing we did find out from Children's Hospital was that amazingly sometime in 2005, all of Carly's medical files had been lost and have not been found to this day. (October 2008).

I phoned the hospital a few more times then got totally fed up with being ignored and sent them a message in November 2007 that my husband and I had just sent in a complaint to The College Of Physicians and Surgeons against the Specialist that we had been trying to have a meeting with along with the Head of Orthopedics and Carly 2003.

We got very quick responses from the Hospital after that. I asked for a meeting to be set up with Ms. Toohey, Carly's Neurologist, Endocrinologist, Dr. Miyanji and ourselves to figure out some kind of plan that was acceptable for Carly. The meeting was set up for December 4th 2007 then we were told closer to the date that none of the doctors would be participating with no explanation why.

We went to the meeting and expressed our concerns about Carly and the long wait for surgery since she was only 20 degrees away from where her organs could be damaged. We were asked if we went ahead with the surgery here would we follow Dr. Miyanji's guidelines. We said yes as he had already told us he agreed that Carly neded surgery soon. We figured out why the doctors were not present at our February appointment with Dr. Miyanji.

In January 2008, I phoned Ms. Toohey and asked what we should do about our appointment with the Shriner's later that month. She said that as things were moving smoothly now at Children's we could cancel and save us the trip down and back again.

We went for our appointment with Dr. Miyanji in February and were told that Carly would be at the end of an 18 month waitlist for surgery as you don't put Peter in front of Paul. We asked how this could be as he had agreed she needed surgery soon but we were told she could wait like everyone else. We reluctantly put her on the list for surgery which would make her surgery in August 2009 - the month before she starts High School.

We told Dr. Miyanji that Carly's back brace made under General Anesthetic in June 2007 was becoming so uncomfortable that she couldn't even wear it anymore and asked to see someone about making a new one. He gave us the card of Robert Ford, a Certified Orthotist who could do this for us. We made an appointment to see him at the beginning of March.

We met Mr. Ford and his wife Robin and immediatley liked them. They were kind and respectful of Carly and answered all our questions. We filled out forms then Mr. Ford wanted to look at Carly and her back brace but Carly was not co-operative. She hates any kind of medical touching as you can imagine. Robert took me aside and explained he didn't like kids to feel upset or scared here so we just took Carly's brace off and he showed me how he could make it a bit more comfortable for her to wear by removing some of the parts that were rubbing against her skin until her new brace could be made. He showed me the kind of brace that he made. It was totally different than any Carly had worn in the past. I believe he said he got the material from England and that it was lighter, cooler and more comfortable than what Carly had previously had to wear. He also ordered us some special undershirts which he said would make her even more comfortable. He told us we just needed to get a mild sedative ordered by Dr. Miyanji so that Carly would be calm but awake when he made the new brace. We thanked them and headed home.

My husband called Dr. Miyanji immediately but got no response. He called again and was told that Dr. Miyanji would not order a sedative for Carly as he had not known her long enough. Exactly how long do you need to know someone to order a mild sedative.

I then began to call Carly's Neurologist as she has known Carly since her first seizure when she was 17 months old. I left a few messages about a sedative for a back brace but no calls back.

We finally e-mailed Sharon Toohey to find out why it was so hard to get a sedative for Carly so that she could be more comfortable and found out that Ms. Toohey was no longer President and were told we should now communicate through Donna Gerelle, the Vice President/Surgery/Surgical Services/Critical Care/Cardiac Sciences and Neuroscience person through the hospital.

Unfortunately we had dealt with Ms. Gerelle in 2003 when Carly's Scoliosis was diagnosed with no help, then were advised to call her again in 2005 and she claimed to not even remember myself, Carly or any problems we had with Children's Hospital.

I immediatley called the Hospital and got the name (Larry Gold) and e-mail address of the new President. I e-mailed him to let him know what was going on with Carly and he e-mailed us back and said he was brand new on the job but would get back to us as soon as possible.

I had thought that maybe at last we could start out fresh with Children's Hospital but soon found out he agreed with everything that had been done.

We set up a meeting for May 8th 2008 to discuss with Donna Gerelle and Dr's Miyanji and Reilley (the only 2 doctors who deal with Scoliosis at Children's)to try and come up with some kind of acceptable way to deal with the situation that we would all be happy with.

We asked if Carly could have a back brace made since it had held her spine at 70 degrees from 2003 until now, wear it for half of the waitlist then take it off for the last half. We were told that by not wearing a brace, it would help Carly's muscles and bones (crush her spine more quickly?) and there is less blood loss in children who didn't wear one prior to surgery. Our request for a brace for half the time was denied.

We asked if Carly could have an earlier X-ray done since her brace had not been fitting for a long time and she was unable to wear it a great deal of time already. They said no. They only do X-rays every 6 months.

We asked then if any damage was done to Carly's spine or internal organs would the Hospital and the Doctors sign something that would state that they would be held accountable. No - Suprise! No matter what we asked nothing would be done exept they had told us that we had never put Carly on the waitlist in February which we did and they finally agreed to do that.

In the May 23rd edition of The Vancouver Sun, I read an article with anger, sadness and about any other negative feeling you can have. It stated that in the last 7 weeks, 25 surgeries had been cancelled at Children's Hospital because of lack of ICU nurses and beds. We were told nothing of this in our meeting 2 weeks before the article came out. It said children and their families were literally showing up at the British Columbia Children's Hospital on the date of their surgery only to be told to go home and they would be called when a new date could be set up. This leads me to believe that unless we are "lucky"enough to have Carly's spine damage her internal organs, we may be waiting a lot longer than the stated 18 months for her surgery.

I sent a letter to the Editor of The Vancouver Sun telling about my feelings on this subject. It was printed in the Saturday May 31st edition uner the Voice of the People area. My letter was named by them "Young lives hang in the balance"and told of how we had a petition going around asking the Government all the way from Stephen Harper, Gordon Campbell, George Abbott, Don Bell, Daniel Jarvis, Carole James and Adrian Dix to follow the guidelines that they had set out stating "If wait times for a specific surgery or procedure become unreasonable, B.C.'s health system would need to shift resources to meet patients' needs". We now have over 850 signatures on this Petition.

We received a letter from a man named David Butterfield who is an Educator and Defender of Universally Recognized Human Rights and Fundamental Freedoms.

He went on to state that the majority of people (including ourselves) are unaware of their Human Rights, especially in relation to Health Care. He quotes from the "International Covenant on Economic, Social and Cultural Rights" which Canada ratified (gave force of law) in August 1976. You can locate the full text of the document online, go to: United Nations High Commissioner for Human Rights web-page and search Human Rights Treaties.

In Article 12, it shows the Governmenthas denied/violated everyone's Human Right to "medical services and medical attention". The term "medical services" relates to "seeing a doctor for diagnosis" and "medical attention" relates to "whatever treatment is needed to achieve health". Obviously not being done in Carly's case, the other children at the hospital and even anyone waiting for treatment for cancer, hip replacements, heart surgeries and on and on and on.

If you believe that Carly and all others deserve treatment now and not years in the future, please sign this petition.

If I stand and yell for my daughters rights it is like a whisper in the Governments ears.

If we all stand together and demand a change it will be like a hurricane hitting them full force.

Please lets all stand up for our rights. If we can have a 2 week Olympic Party here in 2010 with billions of dollars spent on it then surely we have the money to help people before they are deformed or die on these horrific wait lists.

My husband left me 2 weeks before Christmas 2008 because of all the stress this has caused our family. Please help this from happening to other families. It is absolutely horrible.

PLEASE!

Sincerely,

Susan J. Watson, David and Carly Lamont.

P.S. Because of all our trips to Oregon and back we have lost over $12,000 just between December 2006 and September 2007 because of my husbands lost wages and other expenses. We are not blaming the Shriner's. It is amazing that they do this for people. We are just stating how all of this has affected our single income family. Maybe the Government could start spending money to help families like ours who have had to go elsewhere for care we should be getting in our own Province. They seem to be able to give themselves lot's of hefty pay raises so why not?