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Miracle Weekend - Emily Ben

Posted by Shelley and Ben on 31 May 2015 | 0 Comments

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On June 2, 2004 we took our daughter Emily to Victoria General Hospital and she was diagnosed with bacterial meningitis. She was 6 1/2 months old at the time. The medical team there had her in the ICU there immediately. She started retaining fluid and had up to an extra litre of fluid in her body.  Due to the hospital not having a pediatric dialysis machine and afraid of her getting compartment syndrome, she was flown by air ambulance to BC Children’s Hospital. She spent the next 10 days there in the ICU where they were able to treat the meningitis and stabilize her condition. She was then flown back to Victoria General to complete her recovery. A few years later we noticed her legs were bowing outward.  We were referred to BC Children’s where the doctors discovered the meningitis had damaged her bones and growth plates. Her legs were growing unevenly and were deformed.  She was told she would need surgery to correct the deformities and have an ilizarov frame to lengthen her left leg.  She was 5 at this time.  She is now eleven years old and is currently on her third leg lengthening procedure.  She will need to have leg lengthening until she stops growing.  She also has deformities on her right leg and length issues in her arms. 

How often foes Emily come for care?

We come every year for check up's and every time she gets 5 cm out in length she has to get surgery for the frame we have to come every Monday for the first couple of months and now we come every 2-3 weeks.

What has been the biggest challenge for you as a parent of as a family?

Wow the biggest and hardest thing ever is to have our daughter go through so much pain having the frame on for 6 months at a time and having to make sure that we keep the pin sites clean and free of infections. And having to travel on weekly bases from Vancouver Island to the mainland it gets so tiring on us all.

What were some of the scariest and happiest moment for your family?Our daughter gave us such a scare after being in surgery for 6 hours she came out of surgery to the recovery room she had such a bad experience with the anesthetic her oxygen levels where dropping down and she would forget to breath so we had to constantly tell her to breath she ended up being in the recovery room from 4:00 till 10:00pm The happiest moment is to go to the hospital every week and see the progress of her bone growing on the x-ray's and to be told that we finally don't have to come every week.

Tell us about what Emily’s like today:

Emily Ben is a very bright amazing young lady. she loves to sing, she takes voice lesson also loves sewing making her own clothes and stuffies she loves crafts and she would really love to go to Paris some day. Her dislike is having to go to BC Children's hospital to have her leg lengthening procedures she also does not like to sing in front of people. She also does not like wasps.

What message of thanks would you like to tell BC Children’s Hospital?

Words can not express how much you have helped Emily to walk like a normal child for her to be able to have her little legs the same length and for her body not to be so unbalance and also for her leg bone to be straight again. The team in the orthopedics clinic are so very dear to our hearts for all they do for our family from the receptionist to the x-ray team to the physio to the nurses and our wonderful new Dr thank you so very much again and again.

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