Legal Options and Surgery Questions (Canada) - LONG

[mamaofsix]

Hi! Here is my "Long Response" disclaimer!!

Thank you for posting your questions, concerns and your story. I am sorry you and your family have endured so much in such a short time, and I can understand your frustration. I can not answer the questions regarding the legal system there, but I can attempt to assist with some of your other questions.

The leg- When they take the sural nerve from the leg, it controls a patch in the foot. They used this with nerve grafting for my son. He has no limitations with his legs. They used both of his legs.

Tests: For many bpi specialists, the initial "tests" are the evaluations through the movements your child has. It can seem like forever and I also questioned this, but it proved to be correct. This is often the best way to determine the extent of the damage. There are other tests available, like The EMG / electromyogram is a test that evaluates the electrical activity in nerves and muscles. This test can be helpful to determine if abnormalities exist in the way nerves transmit electrical impulses or abnormalities to the muscles themselves, but there are differences in opinion with the effectiveness of the EMG test with infants. If avulsions are suspected, a MRI is usually done prior to surgery.

The Bitterness: Well..it is a journey. I have personally found that my bitterness/anger can be directed. If I can help another parent with an injured child, and join the fight to prevent more injuries, Cameron's injury was not in vain. I can not take back what happened to Cameron, but I have the power to change the future. He had primary surgery, and we still do lots of pt/ot...but he is such a happy kid. We keep going. He may have to do things differently, but it is not his disability- it's a different-ability.

Stay encouraged..it will get better. I am available at anise@ubpn.org

Anise

[nameysmom]

Hi,
I am also from Canada, your family's story is similar to mine. My daughter was 9 lbs 2 oz at birth and had moderate shoulder dystocia which resulted in ROBPI She was transverse the entire time I was in labor but no one would do a c section and insisted that forcep delivery was the way to go. She was referred to a neurologist here in Nova Scotia, but no one here really seems to know what is involved with a brachial plexus injury. She has been seeing an occupational therapist since she was a week old ( she needed a splint for her wrist contracture, which she no longer needs, yay). Our neurologist, as an after thought, decided to contact Dr. Howard Clarke (plastic surgeon), at the Hospital for Sick Children and he was able to see us right away because my daughter was almost 9 months at the time, and that's when they like to do the nerve graft surgery.
So long story short, at 9 months old, we packed the baby up and brought her to Toronto for a 13 hour nerve graft surgery (C5,6,7). Prior to the surgery, she had a myelogram (which diagnosed her C6 avulsion) and an ultrasound of her diaphragm (to confirm that it was working properly) Those were the only tests she has ever had. The surgery went well, baby is 6 months post op, and we were just back to see Dr Clarke and he's happy with her progress. She has regained what she had prior to surgery, which is right on schedule. No limitations to either of her legs. I would recommend him to anybody, he's a bit gruff at time but an excellent surgeon!

Expenses- this has been expensive for us, 3 trips to Toronto so far, 7 nights in downtown hotel, eating out a bunch, biweekly trips into Halifax for physio. We took out a second mortgage on the house to finance our trip for the surgery, but it was worth it, lol.

Legal stuff - I have contacted lawyers, we've been at this for over a year. We are still trying to obtain a medical legal opinion, but the lawyer thinks we have a case. We found a lawyer who does this on a contingency basis, which is very good! The OB the lawyers found to review the charts is still working on it.

Bitterness - Im not sure if that goes away. Its really hard to trust medical personel when the injury to your child was caused by negligence, that's why we had a very hard time deciding on surgery. Im glad we did it though. it's been 16 months and I'm still pretty pissed. I don't think I can ever forgive that nasty "person" who injured my sweet baby.

[claudia]

I want to address the bitterness issue, as the legal and medical issues have been rather well covered.

Getting over the bitterness takes time. I agree with Anise that helping others, helps us deal. But, ultimately, you have to make peace with this. I realized that I hadn't at one of the ubpn camps when a speaker talked about how some people viewed themselves. I saw myself as one of the people who hadn't really done a good job of healing myself. So, a few things that I have learned in the past 11 1/2 years...
1. forgiveness. big key to this. and it really is about forgiving yourself. in the craziness that goes on in a delivery room where things are not being managed, we-the parents- lose control over events. and we tend to blame ourselves. forgive yourself.
2. do something for you. whether it is playing tennis, knitting, going to religious services...something that is FOR YOU.
3. understand that no matter how much you learn (and you should learn it all) and how much therapy you and your child do (and lots of it should be PLAY) in the end, there will be deficits. So, just know that. It is terrible, but it is, what it is.
4. how you deal with your child has a lot to do with how bitter you are. We treated Juliana like all of our other kids. She picked up toys, puts away laundry... we made a decision early on that she was going to be "fine". Mind you, she had NO function. But we decided that it didn't matter! She didn't speak until she was past 4 years old. It didn't matter! I could give you chapter and verse on what was wrong, if you asked. But my husband said she was PERFECT. And she was. And she is.
5. do all the normal stuff. reading, playing...it will be different. But embrace the difference.
6. remember that in all things, anger is a choice. one you make. choose to focus on the positive. don't give the anger the upper hand. it is hard, but doable.

here's what happens... i have an 11 1/2 year old beautiful daughter. she is funny, smart, talented and has a funky, funky arm. she is in tennis camp (yes, competitive tennis) this summer and playing in her first usta juniors tournament. she figured out how to toss the ball for her serve, she has a wicked forehand and natural net sense. I have been a tennis player all of my life and she is wiping me off the court.
she knows she different, but accepts it. some days are worse, some are better.

right now, this will seem very foreign to you and that's okay. but each day try to let go of the anger a little bit more.

good luck,
claudia

[Carolyn J]

RE: Giving up Anger....my 2 cents...
At age 73 and only realized the anger at age 66...[Depression is anger turned inward],I must share that the longer it takes to forgive it only hurts ourselves and takes a HUGE toll on our bodies. My experience is that this is a "Lifetime work in progress" and, as hard as it is I MUST keep myself at the top of the list at all times and that is hard after a 66years of taking care of others 1st.
Carolyn J
LOBPI/73 & still learning

[jmar]

i have a friend who's granddaughter was born without a left hand. she has about a 3 or 4 inch stump. i dont know her very well. last week my friend had a garage sale. the granddaughter was there. one of her "jobs" with the sale was to fold clothing. i watched her fold those clothes better and faster than i could ever think about. she graduated high school with honors and is going to graduate college next year. she is also a manager at a local ice cream shop. she uses that stump like a hand with no fingers. she amazes me every time i see her. her parents do not treat her any different than any of the other kids.i realize this is not a birth injury, but it still has some of the same struggles as an injury. just remember, she is a little girl with an injured arm. not an injured arm with a little girl attatched to it. the best thing you could do for your daughter is to take care of yourself. take time for you and dont neglect yourself. i wish the best for you.

[Melly_00]

Hi. Your story sounds very similar to what myself and my husband faced with our first, Aliyah (robpi). She's now almost 2 and doing extremely well, but it's a battle...lots of physio, ot, visits with the developmental therapist and trips to see dr's Ross and Miller in London. She'll never be 100%, but she can do everything any other two year old can do. I can't answer many expense questions, haven't had to have surgery or anything yet, and she's covered on all her appts due to some amazing childrens health centres in Lambton county (quick shout out to Pathways and St. Clair Child and Youth Services). I can speak a bit about the legal aspect, we met with Barbara Legate in London and she was fantastic! The suit you would be pursuing would be for your child, not so much about your current expenses, but the difficulties that the child will face. They really put our minds at ease, since we now know we have until after Aliyah's 18th birthday to start a case. Takes the pressure off. She also told us that it's better to wait until we know more about the challenges, so she said she didn't want us pursuing a case until after Aliyah starts school. I highly recommend seeing them, the initial consult is free and they spent a good 3 hours working with us.
As for the bitterness and mistrust...not there yet myself. We are considering trying for another child, but I'm scared. My trust in dr's just isn't the same. I was blindly naive and fully thought they would make the best choice for me and the baby and now I'm just not sure. I'm also working on forgiving myself for agreeing to some of those interventions that could have contributed to her injury. It sucks all around...