Carly Arlene Lamont denied medical care

I went forward to the Government and media to let people know that there is an 18 month (or more) waitlist for life altering surgeries, not to mention British Columbia Children's Hospital has cancelled 50 surgeries between April and July 2008. I did this with the full knowledge of the only 2 Orthopedic Specialists who do the type of surgery Carly needs (Scoliosis) and the Hospital. This has nothing to do with BCCH and everything to do with the fact that the Government is not following their own guidelines which state: "If wait times for specific surgeries or procedures become unreasonable, B.C.'s health system would need to shift resources to meet patients' needs." Obviously not being done for BC Children's Hospital.

We have followed the Spcialists advice and have even taken Carly out of her back brace which she had worn 22 hours a day (and also 2 stints in a back cast done under General Anesthetic worn 24 hours a day for 6 weeks at a time in Portland, Oregon), since her Scoliosis was found at 70 degrees in 2003. Carly was 7 years old at the time and with a 70 degree curve, she was 20 degrees above what is considered a surgery candidate and 20 away from where internal organ damage can occur from the spine crushing the organs. We had no option but to brace her as once you fuse the spine, it does not grow anymore and at 7 years old Carly had a lot of growing to do.
 
We asked the Specialists if Carly could have one more brace made and wear it for half the waitlist time, since bracing her had held her spine at 70 degrees from 2003 to 2008. We were told it is better for her to be out of one to help strengthen her muscles and bones and even though it scared us greatly, we followed their advice showing good faith and trust in them. Carly's last back brace had not fit her properly for quite a while by then (it was also done under General Anesthetic so was made really tight in June 2007) but Carly had been going through puberty and her body had changed greatly and we were very concerned that her spine was already curving more since she could hardly wear it anymore.
 
Carly had a huge seizure in June 2008 (about 1 hour and 30 minutes) and had to have many meds to stop it. (Carly also has Epilepsy.) We asked the doctor who took care of her at Lions Gate Hosptial if it would be ethical to have an X-ray done on her spine once she woke up from all the meds and she said it was no problem at all and we had it done and told them to sent it to the Orthopedic Clinic at BC Children's Hospital so they could see them and check them out with her old ones. We found out her spine so far had not moved which gave us much peace of mind as the Specialists at Children's Hospital and Carly's Occupational Therapist had all said once she is out of the brace, gravity will start taking it's toll at some time on Carly's spine and were told by the Specialists that we were lucky - there were children on the waitlist whose spines were already at 100 to 110 degrees and they were still waiting for their surgeries. Still the Government does nothing.
 
Children are literally showing up at BCCH on the day of their surgeries and being told to go home, there aren't enough ICU nurses and they will have to reschedule for another day. This has been published in some of Vancouver's newspapers and on the news. Some children are on their second cancellations. All this then pushes the children's surgeries behind them back even further (as should be, the other's were on the list first) but when does this vicious circle stop. When a child is completely deformed or dies? Does the Government even care?

Nothing more was said to us until my daughter's next Orthopedic Appointment 3 months later when my husband was handed a letter saying Carly was no longer under the care of The Orthopedic Section of BCCH. Three more months of my daughters precious time on the waitlist (6 months now, to tell us we need to go out of Province to get our daughters surgery (unless Carly becomes an emergency case - she is only 20 degress away from where her spine can start crushing her internal organs) but we have no Specialist looking after her now to make sure this isn't happening. Luckily we now have a mediator trying to work with BCCH and us to get Carly the care she needs. Unfortunately, even if Carly gets back on the list, it changes nothing about the horrendous waitlists.

We do not want Carly to be put in front of any other child, we are just trying to get the word out to people that if your child needs surgery at BCCH and it is not deemed an emergency, this is what you are in for. The Government seems to have more important things to deal with. (Billions for the Olympics- and I like the Olympics - but which is more important?)
We do not want to travel out of B.C. to have this done. We are residents of British Columbia and pay our taxes. It is an extremely delicate and dangerous surgery, especially for kids with Cerebral Palsy which Carly has also. We want to be at home where we have the support of our family and friends. There is a years worth of recovery after this surgery, more if there are any complications, and children need to be checked by their Specialists many times after surgery. This would mean us travelling back and forth between wherever we could find a new Specialist outside of B.C. to help Carly and then who knows how long of a waitlist she will be put on then?

Carly has done nothing wrong, and neither have we. We all have freedom of speech and that should never be taken away, and most importantly is  Carly's Human Rights. I believe all of these have been completely ignored and broken and the one who loses is my daughter and all the other children and their families put in this position by an uncaring Government.

This petition is not only for my daughter, and I told everyone at our meeting in May 2008 at BCCH that I would keep on fighting for these kids even if it didn't help my daugher get her surgery sooner. There are at least 150 children waiting for surgeries at the hospital, then they have to cover emergency ones first, of course. How can 2 Specialists and not enough ICU nurses deal with this?

The Government needs to put money into Children's Hospital as their guidelines have said, to hire at least one new Specialist and more ICU Nurses to cut these outrageous wait times. They have been told for years that there was going to be a shortage of nurses, especially ones in the ICU, by the Nurses Union because many nurses have retired or are coming up to retirement and not enough new ones are coming in to replace them.

Carly's story was written up in The Vancouver Sun on August 7th by Pamela Fayerman and we were also on the CTV news but no one has come forward to help and the Government continues to ignore us.

 Is there anyone who can help our daughter, who now has no one looking after her and is not on any surgery list. My e-mail address is samdav1@telus.net and any help would be greatly appreciated. Carly does not have time on her side.

Thank you so much, and please sign if you agree that 18 months plus is far too long for any child to be waiting to have their life improved.

Susan J. Watson and Carly Lamont.