Daughter born 11pds12ounces with severe BPI in Canada
Daughter born 11pds12ounces with severe BPI in Canada
Looking to connect with families in Canada (Ontario), to share stories and stuff, like to learn (if any), any events planned in Ontario for children born with this birth injury,...my daughter is 5yrs old now,..bin through hell as u well know having a child born with this preventable birth injury.
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cassidysmom
- Posts: 167
- Joined: Mon Feb 05, 2007 8:56 pm
Re: Daughter born 11pds12ounces with severe BPI in Canada
Hi there,
I'm Dawn, I live in Manitoba. My daughter is treated in Toronto though,by DR. Clarke (I'm assuming he treats your daughter as well?)
I know a couple of families in Ontario who have children with a BPI.....I have never heard of any events in Canada.
I would love to connect with you anyway, by email or even phone..which ever you are more comfortable with.
My daughter is 22 months and had the primary surgery at Sick Kids a year ago...I will be in Toronto next month for Cassidy's one year post op visit.
If you feel like chatting further don't hesitate to contact me!
take care,
Dawn,
mom to Cassidy 22 months ROBPI
I'm Dawn, I live in Manitoba. My daughter is treated in Toronto though,by DR. Clarke (I'm assuming he treats your daughter as well?)
I know a couple of families in Ontario who have children with a BPI.....I have never heard of any events in Canada.
I would love to connect with you anyway, by email or even phone..which ever you are more comfortable with.
My daughter is 22 months and had the primary surgery at Sick Kids a year ago...I will be in Toronto next month for Cassidy's one year post op visit.
If you feel like chatting further don't hesitate to contact me!
take care,
Dawn,
mom to Cassidy 22 months ROBPI
Re: Daughter born 11pds12ounces with severe BPI in Canada
Hi Dawn,..thank you for replying,...yes, my daughter also was and is being treated by doctor clark,..my daughter "Summer" just turned 5 on the 31st of Jan.,,,she is doing pretty good,..except when she gets a cold, that is when it is living hell for her and us,.she suffers so badly,...so what was the extent of damage to your daughter? how is she doing?,...did u file a lawsuit?,..would love to chat with u also (obviusly,..haha)well get back to me when u can,..and again thanks for responding,..we also have to go to TO soon to see doctor clark and emily her OT.
take care, talk to ya soon
Roxanne
take care, talk to ya soon
Roxanne
Re: Daughter born 11pds12ounces with severe BPI in Canada
It seems no-one like to talk to canadians about this disability,..but to new moms coming on to this site please e-mail me before seeing doctor nath,..u see Dr. Nath was a canadian doctor,..and he is looked at like a god with this type of injury, but their r things ppl need to know about him,...this thing about primary, and secondary and so on surgeries can be all done at once, but because, u guys dont have OHIP like us canadians,..he puts u and your babies born with this type of injury through on-going surgeries, that can be done all at once,..why do u think he treats this as an advertisement on the internet???, i know he has done well for some babies,..i know that, but what he has done in 3 or 4 surgeries he could have done in one,..pls new mothers coming on to this site, talk to me,..this is my opinion.
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Daughter born 11pds12ounces with severe BPI in Canada
Roxanne,
I know what you are saying, BUT, very often as the child gets older and has some more return of function, the secondary surgeries are NOT needed. You don't know what muscle/tendon/bone surgeries your child will need before, when he/she is still a baby. Primary surgery can bring back enough function that you don't need the secondary surgeries.
It would not be wise to do multiple surgeries when the child is still a baby (if you did primary nerve surgery and other secondary: tendon transfer surgeries). It's not because the USA doesn't have OHIP or other type of "free" health care that they don't do many surgeries at once when the child is a baby. It's because you don't know what the deficits are yet and need to wait to see what recovery will occur.
Marieke (32, LOBPI)
I know what you are saying, BUT, very often as the child gets older and has some more return of function, the secondary surgeries are NOT needed. You don't know what muscle/tendon/bone surgeries your child will need before, when he/she is still a baby. Primary surgery can bring back enough function that you don't need the secondary surgeries.
It would not be wise to do multiple surgeries when the child is still a baby (if you did primary nerve surgery and other secondary: tendon transfer surgeries). It's not because the USA doesn't have OHIP or other type of "free" health care that they don't do many surgeries at once when the child is a baby. It's because you don't know what the deficits are yet and need to wait to see what recovery will occur.
Marieke (32, LOBPI)
Re: Daughter born 11pds12ounces with severe BPI in Canada
Roxanne,
To further Marieke's comment, even when a secondary surgery IS necessary in a child who has undergone primary (which is most often the case), you will not know the type or extent of secondary surgery needed for quite some time.
Nerve recovery continues for 18-24 months post primary surgery. Many specialists feel nerve growth continues even longer in babies and young children, but 18-24 months is a safe, demonstrated number to work with. It is impossible to predict the amount of recovery a child will have during this time period.
For example, a child might not regain good biceps function after primary surgery. That child would need a secondary surgery addressing that specific deficit - biceps. Another child might regain good biceps function, but not recover good wrist and thumb movement. That child would need an entirely different kind of secondary surgery to improve his function. At the time of primary surgery, it would be impossible for the surgeon or parent to anticipate what the child will recover or not recover from nerve grafting and/or transfer.
Further compounding this issue is the fact that most secondary surgeries have a "give-to-get" factor. A prime example is a tendon transfer about the shoulder, performed to give the child increased active external rotation. What the surgeon gives the child "at the top", they often lose "from the bottom". Meaning, the amount of external rotation a surgeon needs to give the child directly impacts the amount of internal rotation he could lose. If a surgeon performed this surgery before a sufficient amount of nerve recovery had transpired, they would have no way of accurately predicting how much of an external rotation boost the child would need. The child might unnecessarily lose a portion of his internal rotation.
I understand your desire to minimize the surgeries our children must undergo. No parent wants to put his or her child through two or three surgeries, when they could put him through one. However, in the case of secondary surgeries, it is absolutely, absolutely, absolutely in the child's best interest to have an accurate picture of function before proceeding.
mica
To further Marieke's comment, even when a secondary surgery IS necessary in a child who has undergone primary (which is most often the case), you will not know the type or extent of secondary surgery needed for quite some time.
Nerve recovery continues for 18-24 months post primary surgery. Many specialists feel nerve growth continues even longer in babies and young children, but 18-24 months is a safe, demonstrated number to work with. It is impossible to predict the amount of recovery a child will have during this time period.
For example, a child might not regain good biceps function after primary surgery. That child would need a secondary surgery addressing that specific deficit - biceps. Another child might regain good biceps function, but not recover good wrist and thumb movement. That child would need an entirely different kind of secondary surgery to improve his function. At the time of primary surgery, it would be impossible for the surgeon or parent to anticipate what the child will recover or not recover from nerve grafting and/or transfer.
Further compounding this issue is the fact that most secondary surgeries have a "give-to-get" factor. A prime example is a tendon transfer about the shoulder, performed to give the child increased active external rotation. What the surgeon gives the child "at the top", they often lose "from the bottom". Meaning, the amount of external rotation a surgeon needs to give the child directly impacts the amount of internal rotation he could lose. If a surgeon performed this surgery before a sufficient amount of nerve recovery had transpired, they would have no way of accurately predicting how much of an external rotation boost the child would need. The child might unnecessarily lose a portion of his internal rotation.
I understand your desire to minimize the surgeries our children must undergo. No parent wants to put his or her child through two or three surgeries, when they could put him through one. However, in the case of secondary surgeries, it is absolutely, absolutely, absolutely in the child's best interest to have an accurate picture of function before proceeding.
mica
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cassidysmom
- Posts: 167
- Joined: Mon Feb 05, 2007 8:56 pm
Re: Daughter born 11pds12ounces with severe BPI in Canada
I agree with Mica and Marieke.... my daughter Cassidy is being treated in Toronto, Canada and she has only had the primary surgery, her specialist feels that healing can take place for up to 36 months...Cassidy may be a candidate for secondary surgery but only time will tell.
To rush and do all surgery at once is kind of jumping the gun and may even be unnecessary.
To rush and do all surgery at once is kind of jumping the gun and may even be unnecessary.