Hello!
Over the next couple of weeks I will pose questions that I would like to inquire about Osteogenesis Imperfecta and how it affects individuals and their families. I found this link by googling Osteogenesis Imperfecta and this is the the best link that I could find in order to describe Osteogenesis Imperrfecta. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002540/
As I was reading about Osteogensis Imperfecta I asked myself several questions; questions that I would like to know if I were in the shoes of parents would be expecting an angel with this crippling disease. Some of the questions that I found myself asking were: I wonder how families with a child that was born with Osteogenesis Imperfecta prepare for the arrival of their angel? What is the safest or recommended birthing procedure? What type of car seat is recommended for safe transportation of their precious child? What do parents do in order to drive their child safely to doctor appointments? What types of clothing should the parents buy since their child is very fragile? As the child gets older, what types of food are they allowed to eat or how is their food prepared in order to reduce broken teeth? Are there parenting classes that teaches the parents the best and safest way to handle their child? If there are any older siblings how do the parents prepare to tell them about how to handle or help care for their brother or sister?
I did some research and I found that women who are carrying a baby that has been diagnosed with Osteogenesis Imperfecta should be seen by a doctor that has experience delivering babies with serious medical conditions or they should be seen by a doctor that feels competent enough to perform the procedure. I would think that since there are not many cases of Osteogensis Imperfecta many doctors would not be experienced with the birthing procedure of a child born with that disease compared to a child whose mother suffers from preeclampsia.
Hopefully when I return later on this week I can find more information on some of the questions that I had while I was thinking about this blog. Until next time, live, love, and be happy <3
Hi Rebecca!
ReplyDeleteThis is a first for me; I have never even heard of this, or should I say I have never thought about this. I think your concerns are highly appropriate and as a parent, simplicity can sometimes be taken for granted. As you stated, the first step needs to be taken even before the baby comes, and finding an experienced doctor to deliver the baby safely under the even more delicate circumstances would be extremely important. I started to look at this too once I read your blog just to look at the research being done. I'm sure you've come across this but there's this site too : http://rarediseases.info.nih.gov/GARD/Condition/1017/Osteogenesis_imperfecta.aspx
Thank you for sharing! I will be checking back to see what you and others have shared as well :)
Hey Monica,
DeleteI was reading what this article said and I read that children of parents only have a 25% chance of having the condition. I think that is a very low percentage. If the chances are that low I don't think the point of genetic testing will be necessary. I know it would be great to know whether or not your children would have the disease but that is something that should come up during the prenatal testing. If you knew that your parents carried the trait would you have yourself and partner checked out to see if you carried the recessive trait? Why or why not?
Rebecca,
ReplyDeleteThis is a very interesting topic and something about which I know absolutely nothing. You've done a great job of setting the stage for future inquiry into the disorder itself and making accommodations for those afflicted by it. I'm really looking forward to following along with your blog and expanding my own knowledge. Good work thus far.
Gabe
Thank you very much Gabe!! While doing some additional research I found some interesting information. I found out that there are different levels of the disease. I want to find out the determining factors that determines/states what levels individuals would be placed in.
DeleteRebecca,
ReplyDeleteAlong with Monica and Gabe, I have never heard of this before. I think it is a really interesting and sad topic. I couldn't imagine being a parent of a child with this disease. I feel like I have just as many questions if not more that are similar to yours. I have noticed from your blog and many others I am finding out about a lot of disabilities I have never heard of before. This amazes me that there are so many out there and so many children can be effected. I am interested to come back to your blog and find out more as well as do some of my own research on this topic to share with you. Looks great so far!
Libby
Thanks Libby I appreciate you reading my blog. :-)
DeleteRebecca,
ReplyDeleteGreat job on your first time blogging, you seem like a natural :) I am also very interested in reading about your inquiry topic. I did some research a few years ago about this for one of my classes. I also read the book "Handle With Care" which is an excellent story that gives insight to the life and family who have a child with OI. Can't wait to read more from you.
Oh cool!! Thanks Liz I'm going to go the library to check that book out! Thanks you very much for reading my blog!
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