I was first introduced to Ruth Levy Guyer's work when I read her book, Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families, and Society.
http://www.amazon.com/Baby-Risk-Uncertain-Legacies-Miracles/dp/1933102268/sr=8-1/qid=1170879288/ref=sr_1_1/104-6340677-2245540?ie=UTF8&s=books
You can read my blog post about the book here.
She is also a regular on NPR's "All Things Considered".
Her recently published piece for www.scienceprogress.org is a must read. Her words echo what most of us have discussed here with regards to accurate reporting.
A big thank you to Helen Harrison for sending the link to the group.
Tuesday, November 13, 2007
Justification
Whenever I write about Paige, her life and her current issues, I get comments and private emails asking me why I am so negative.
I read other blogs and notice that whenever a parent writes about their child's current issues (or their potential issues) they feel the need to also add statements like, "but I love him/her anyway" or "it doesn't change the way I feel about my child.".
Who are you trying to convince? Yourself? Family? Strangers?
Are you trying to justify a decision?
Why don't I add these statements to my blog?
I do not need to justify my love for my children.
I read other blogs and notice that whenever a parent writes about their child's current issues (or their potential issues) they feel the need to also add statements like, "but I love him/her anyway" or "it doesn't change the way I feel about my child.".
Who are you trying to convince? Yourself? Family? Strangers?
Are you trying to justify a decision?
Why don't I add these statements to my blog?
I do not need to justify my love for my children.
Monday, November 12, 2007
9 Years
Happy Birthday to our sweet Paige!
We loved you from the moment you were conceived.
The first time I held you, I thought my heart would leap from my chest.
Until you were born I honestly never knew emotion existed that was this strong. So strong that there are no words to describe the feeling.
You were born fighting.
As you got older, your personality quickly emerged.
You are a silly girl,
who loves the camera.
You never colored on the walls.
Your body was your canvas!
You sure do love animals
And they love you too!
You are a girly girl, through and through!
But you can be a tough chick too!
In your short 9 years you have been through a lot.
But your spirit always shines through.
You are a fantastic big sis!
You are such a courageous young lady.
You have captured the world with your eyes.
Oh your eyes, your beautiful eyes.
We love you so much Miss Paige.
We are honored to be a part of your journey.
Happy Birthday Miss Paige!
Wednesday, November 7, 2007
So Many Good Points
So often, there are many wonderful, thought provoking points that are made in the comments section on my blog. My fear is that they get missed.
I would like to bring forward some of the ones that were left on the post titled, "Dear Dr. Anwar".
These are not in any order. And, please know that I honestly felt there were many good points, not just the ones listed below. (Hopefully you can read them. Blogger seems to want to squish my words together, despite me telling it not to.)
I am starting with Chris's comment because I feel that she sums up my feelings and, as always, it is beautifully written.
Chris wrote:
"When I read all the comments, it gives me a "solemn" feeling. I have read such give-and-take before on this blog and on others, such as Neonatal Doc's, and have regarded it as "spirited debate". This time, however, I see and hear and feel that we are asking one another for tolerance." and "And we are asking one another for tolerance, each for her own perspective. It is solemn to me, even spiritual. Please, let us give one another this great gift."
I have seen a change in the comments section of this past post, compared to others. Many people were stating their points and then, after reading others comments, making a great effort to understand where the other person was coming from. Seriously folks, call me hormonal, but it was beautiful. I thank you for it too.
23wktwins'mommy wrote:
"I just don't want parents who opted to resuscitate feel that they loved their child less because they chose to give them a shot rather than save them from NICU and possible long term pain. I can see how a family who had seen a suffering child not want that for their own. The tough part is there is a spectrum, and some children have *better* outcomes than others. Living with either decision can be difficult, I'm sure."
Terri w/2 wrote:
"I will never, ever waiver from believing that this decision was THE RIGHT ONE, and the neonatologist's decision to over-ride our decision was absolutely the WRONG one."
Anonymous (11/5 at 8:31) wrote:
"I had a note in my chart not to resuscitate before 26 weeks. My husband and I quickly changed our minds when I was in the delivery room at 24.1 weeks. Our doctor kept reminding us of our previous request but we demanded our daughter be resuscitated."
Helen Harrison wrote:
"We need to take our heads out of the sand, and begin speaking out whenever the media or others try to gloss over, or misrepresent, the realities of preterm birth and its consequences. "
Yes! Yes! Yes! We are never going to be a society in which we can make decisions based on informed consent if we are never informed!
I would like to bring forward some of the ones that were left on the post titled, "Dear Dr. Anwar".
These are not in any order. And, please know that I honestly felt there were many good points, not just the ones listed below. (Hopefully you can read them. Blogger seems to want to squish my words together, despite me telling it not to.)
I am starting with Chris's comment because I feel that she sums up my feelings and, as always, it is beautifully written.
Chris wrote:
"When I read all the comments, it gives me a "solemn" feeling. I have read such give-and-take before on this blog and on others, such as Neonatal Doc's, and have regarded it as "spirited debate". This time, however, I see and hear and feel that we are asking one another for tolerance." and "And we are asking one another for tolerance, each for her own perspective. It is solemn to me, even spiritual. Please, let us give one another this great gift."
I have seen a change in the comments section of this past post, compared to others. Many people were stating their points and then, after reading others comments, making a great effort to understand where the other person was coming from. Seriously folks, call me hormonal, but it was beautiful. I thank you for it too.
23wktwins'mommy wrote:
"I just don't want parents who opted to resuscitate feel that they loved their child less because they chose to give them a shot rather than save them from NICU and possible long term pain. I can see how a family who had seen a suffering child not want that for their own. The tough part is there is a spectrum, and some children have *better* outcomes than others. Living with either decision can be difficult, I'm sure."
Tammy wrote:
"I did feel guilty during the NICU for wanting him to live despite any future statistical outcome. I now know that there are no guarantees when it comes to the future. I don’t think doctors can list all possible outcomes but I think they should give you the facts. I wish premature births, especially micro-preemies cases were followed better. I definitely wish doctors (other specialists) beyond the NICU were more knowledgeable about prematurity. The public needs to know more."
I too felt guilty when Paige was in the NICU. It was our decision that put her there. But, over the years I have learned to let that guilt go. That's my wish for new preemie parents who are 2nd guessing their decision... let it go.
Terri w/2 wrote:
"I will never, ever waiver from believing that this decision was THE RIGHT ONE, and the neonatologist's decision to over-ride our decision was absolutely the WRONG one."
Anonymous (11/5 at 8:31) wrote:
"I had a note in my chart not to resuscitate before 26 weeks. My husband and I quickly changed our minds when I was in the delivery room at 24.1 weeks. Our doctor kept reminding us of our previous request but we demanded our daughter be resuscitated."
Buddhistmama wrote:
"In the end, we each make our decision and make our peace with that decision. But we should stop judging the decisions made by others especially if they differ with the ones we might have made."
and
"It is unclear to me why my choice must threaten someone who has made a different choice, unless they believe things would be better if we all made the same choices. One can read Orwell's 1984 and see what that kind of world looks like."
Kim's last statement echos my feelings. Why are we so threatened when someone makes a different choice than ours?
And finally...
Helen Harrison wrote:
"We need to take our heads out of the sand, and begin speaking out whenever the media or others try to gloss over, or misrepresent, the realities of preterm birth and its consequences. "
Yes! Yes! Yes! We are never going to be a society in which we can make decisions based on informed consent if we are never informed!
Tuesday, November 6, 2007
Doctors Unmedicated
If you have not done so already, head on over to Doc Rob's blog and have a listen to the first (and hopefully not last) podcast, cleverly called Doctors Unmedicated.
There you will meet Doctor Rob, who blogs under Musings Of A Distractible Mind, and Doctor Clay, formerly known as Dr. Clark Bartram of Unintelligent Design. (Brownie points to the first person who can identify Dr. Clay's 2 other blogs)
I have long loved the interaction between the 2 of them and it really shows in their podcast. A lot of fun and a great discussion on the current decision of the FDA to pull cold meds used for children.
Enjoy!!
There you will meet Doctor Rob, who blogs under Musings Of A Distractible Mind, and Doctor Clay, formerly known as Dr. Clark Bartram of Unintelligent Design. (Brownie points to the first person who can identify Dr. Clay's 2 other blogs)
I have long loved the interaction between the 2 of them and it really shows in their podcast. A lot of fun and a great discussion on the current decision of the FDA to pull cold meds used for children.
Enjoy!!
Wednesday, October 31, 2007
Dear Dr. Anwar,
October 27, 2007 marked 9 years since the day we met. For my husband and I, it was the scariest day of our life. I was admitted to the hospital, 23 weeks pregnant, with premature rupture of membranes. We were told that, statistically, our baby would be born within 24 hours.
I asked to speak to a neonatologist and you took some time out of your day to visit with us. Based on what I had seen on television and read in magazines about preemies, I fully expected you to walk in and tell us that our baby would be just fine. I was scared and desperately needed to be reassured.
Instead of reassurance, you delivered honesty. You explained that there would be a good chance that our baby would not be able to walk, talk or lead a normal life. You listed other long term issues that she could face, but I was so out of my mind with fear, I don't recall your exact words. You informed us that we had the option of letting the delivery team know that we did not want to have her resuscitated, but instead we could just hold her during her final moments. You told us that you could even help us make those arrangements. You were compassionate and you let us know that you would choose not to resuscitate if it was your own wife in the situation.
Being scared and having an incorrect perception of preemies, I became angry at you. I don't remember my exact words to you but I'm pretty sure they were not pleasant. I let everyone know how unhappy I was, all the way up to the director of the hospital. For this, I am incredibly sorry.
2 days later I was transferred to a hospital with a level 3 NICU. Our daughter, Paige, was born at 25.5 weeks, at 805 grams. She spent 78 days in the NICU and upon discharge, we were told that she had sailed through the NICU and would catch up to her peers by age 2 or 3.
My husband and I thought of you every time Paige reached a milestone. Your words never left us. It was almost as if we felt that we needed to prove you wrong. Paige does walk, she talks and is quite intelligent.
But, her life has been anything but normal. She suffers with an axiety disorder, OCD, has very mild CP, chronic constipation, epilepsy, severe sensory issues, social differences, daily headaches, daily stomach aches, chest pain, leg fatigue and pain in her feet. The long term issues related to prematurity are something that Paige deals with every day of her life. Over the last (almost) 9 years she has endured many medical tests, a few surgeries and constant doctors appointments. It seems to never end.
Until she reached that magical age of 3, we lived under the belief that all would eventually be ok. After all, all of the preemies shown in the media are fine, without any lasting issues from their early birth.
After her third birthday passed we started to think that her issues were our fault. She had behavior issues that were draining us all. Her sensory issues were at their worst and her social differences were becoming more apparent.
It was at this time that your honesty was appreciated. Your words became comforting to us. Remembering that you had said there may be long term issues, helped us to realize that it was not our fault. I began researching and found that long term issues in preemies were actually quite common.
Dr. Anwar, over the years your honesty has become more and more relevant in our life. So many parents were never given the information that you delivered to us 9 years ago. In turn, they are shell shocked when their child passes that magical age of 3 and have not caught up to their peers.
When I became unexpectedly pregnant last year, I made my wishes known that I only wanted my baby to receive comfort care if he was born before 24 weeks. Thankfully I was able to carry our son to 35.4 weeks but I never would have been able to reach that decision had you not given us that choice 9 years ago.
I wanted to take this time to thank you and encourage you to keep being honest. Even if the information you deliver is not well received, it will be important to those parents in the future. Long term issues related to prematurity are real and more parents need to be told.
Respectfully,
Stacy
I asked to speak to a neonatologist and you took some time out of your day to visit with us. Based on what I had seen on television and read in magazines about preemies, I fully expected you to walk in and tell us that our baby would be just fine. I was scared and desperately needed to be reassured.
Instead of reassurance, you delivered honesty. You explained that there would be a good chance that our baby would not be able to walk, talk or lead a normal life. You listed other long term issues that she could face, but I was so out of my mind with fear, I don't recall your exact words. You informed us that we had the option of letting the delivery team know that we did not want to have her resuscitated, but instead we could just hold her during her final moments. You told us that you could even help us make those arrangements. You were compassionate and you let us know that you would choose not to resuscitate if it was your own wife in the situation.
Being scared and having an incorrect perception of preemies, I became angry at you. I don't remember my exact words to you but I'm pretty sure they were not pleasant. I let everyone know how unhappy I was, all the way up to the director of the hospital. For this, I am incredibly sorry.
2 days later I was transferred to a hospital with a level 3 NICU. Our daughter, Paige, was born at 25.5 weeks, at 805 grams. She spent 78 days in the NICU and upon discharge, we were told that she had sailed through the NICU and would catch up to her peers by age 2 or 3.
My husband and I thought of you every time Paige reached a milestone. Your words never left us. It was almost as if we felt that we needed to prove you wrong. Paige does walk, she talks and is quite intelligent.
But, her life has been anything but normal. She suffers with an axiety disorder, OCD, has very mild CP, chronic constipation, epilepsy, severe sensory issues, social differences, daily headaches, daily stomach aches, chest pain, leg fatigue and pain in her feet. The long term issues related to prematurity are something that Paige deals with every day of her life. Over the last (almost) 9 years she has endured many medical tests, a few surgeries and constant doctors appointments. It seems to never end.
Until she reached that magical age of 3, we lived under the belief that all would eventually be ok. After all, all of the preemies shown in the media are fine, without any lasting issues from their early birth.
After her third birthday passed we started to think that her issues were our fault. She had behavior issues that were draining us all. Her sensory issues were at their worst and her social differences were becoming more apparent.
It was at this time that your honesty was appreciated. Your words became comforting to us. Remembering that you had said there may be long term issues, helped us to realize that it was not our fault. I began researching and found that long term issues in preemies were actually quite common.
Dr. Anwar, over the years your honesty has become more and more relevant in our life. So many parents were never given the information that you delivered to us 9 years ago. In turn, they are shell shocked when their child passes that magical age of 3 and have not caught up to their peers.
When I became unexpectedly pregnant last year, I made my wishes known that I only wanted my baby to receive comfort care if he was born before 24 weeks. Thankfully I was able to carry our son to 35.4 weeks but I never would have been able to reach that decision had you not given us that choice 9 years ago.
I wanted to take this time to thank you and encourage you to keep being honest. Even if the information you deliver is not well received, it will be important to those parents in the future. Long term issues related to prematurity are real and more parents need to be told.
Respectfully,
Stacy
Ribbon for *Prevention* of Prematurity
I received the following email.... Anyone have any ideas?
"Hi Stacy;
I'm wondering about something - perhaps you would know. . is there a "ribbon" to commemorate prevention of prematurity specifically? I know that the MOD has used pink/blue ribbons for prematurity "awareness". .however, I see from doing some searching that this also commemorates infant loss and a few other things, not specific to prematurity. Would you be interested in launching a "prevent prematurity" ribbon through your sight by asking your list members for suggestions? My thought was "mother of pearl". "
Does anyone know if there is a ribbon specifically to draw awareness to the *prevention* of prematurity?
"Hi Stacy;
I'm wondering about something - perhaps you would know. . is there a "ribbon" to commemorate prevention of prematurity specifically? I know that the MOD has used pink/blue ribbons for prematurity "awareness". .however, I see from doing some searching that this also commemorates infant loss and a few other things, not specific to prematurity. Would you be interested in launching a "prevent prematurity" ribbon through your sight by asking your list members for suggestions? My thought was "mother of pearl". "
Does anyone know if there is a ribbon specifically to draw awareness to the *prevention* of prematurity?
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