Chicago BPI Group needs YOU!
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Chicago BPI Group needs YOU!
It would be great to have written information for the new bpi parents.
It should be hospital policy to bring in some emotional support for the family just as they do for other newborn issues.
I also think that all infants with any type of injury (mild transient included) should be seen by a neurologist immediately after birth and he should be the one to teach the parents ROM.
Two of my granddaughter were born 3 months premature and while that is a whole different issue and life threatening requiring 3 months in NICU.
I was given a pamphlet for grandparents explaining how to adjust their ages...
I was also included in a visit with the neonatologist who explained in detail what to expect.
I think the same consideration and support could be given to the bpi parents during their short stay in the hospitals after birth.
That is the only way that babies will be assured of proper and immediate care and also parents could be assured that they are not alone.
Kath (adult/obpi)
It should be hospital policy to bring in some emotional support for the family just as they do for other newborn issues.
I also think that all infants with any type of injury (mild transient included) should be seen by a neurologist immediately after birth and he should be the one to teach the parents ROM.
Two of my granddaughter were born 3 months premature and while that is a whole different issue and life threatening requiring 3 months in NICU.
I was given a pamphlet for grandparents explaining how to adjust their ages...
I was also included in a visit with the neonatologist who explained in detail what to expect.
I think the same consideration and support could be given to the bpi parents during their short stay in the hospitals after birth.
That is the only way that babies will be assured of proper and immediate care and also parents could be assured that they are not alone.
Kath (adult/obpi)
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Chicago BPI Group needs YOU!
Rather than re-invent the wheel, here you go:
http://ubpn.org/awareness/A2002newparents.pdf
I think this brochure is very comprehensive, yet not too overwhelming for a parent of a newborn. The only things I would suggest is adding the website www.nichcy.org as a reference (perhaps where it talks about EI), adding your local support group contact info. where it talks about finding a local support group, maybe listing local drs. / therapists, and perhaps making a suggestion to write down notes about everything they remember about their prenatal care and more importantly about their L&D / hospital stay in case they later decide to file a lawsuit.
~Tina, bpmom@comcast.net
http://ubpn.org/awareness/A2002newparents.pdf
I think this brochure is very comprehensive, yet not too overwhelming for a parent of a newborn. The only things I would suggest is adding the website www.nichcy.org as a reference (perhaps where it talks about EI), adding your local support group contact info. where it talks about finding a local support group, maybe listing local drs. / therapists, and perhaps making a suggestion to write down notes about everything they remember about their prenatal care and more importantly about their L&D / hospital stay in case they later decide to file a lawsuit.
~Tina, bpmom@comcast.net
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Grandma Lou in NH
- Posts: 31
- Joined: Tue Aug 23, 2005 8:39 am
Re: Chicago BPI Group needs YOU!
How about listing web sites. Two that come to my mind, as being the most helpful to me.
www.injurednewborn.com and ubpn.org
What a great idea you have. Good luck, Lou
www.injurednewborn.com and ubpn.org
What a great idea you have. Good luck, Lou
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Chicago BPI Group needs YOU!
good service
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JamieMarie'smommie
- Posts: 178
- Joined: Thu Apr 14, 2005 11:21 am
Re: Chicago BPI Group needs YOU!
I love the handout idea. I agree with having the checklist and with having the websites and/or maybe putting the UBPN phone number.
I wish the doctors and nurses would have just told me what was wrong with Jamie when I had her instead I had to read that she had a BPI when I pulled all the records from the hospital.
I wish the doctors and nurses would have just told me what was wrong with Jamie when I had her instead I had to read that she had a BPI when I pulled all the records from the hospital.
