A comment was left under the previous post that I feel would be better answered if I started a new post.
"This is a great post... and I am happy for your success at carrying your son to 35-4.
But I am wondering, you often talk about your advocacy- and I am wondering, what is it for? I know you wish to educate the masses about the real side of prematurity, and I respect that, I do. But what end purpose is in sight? The awareness you deserve? The end to biased coverage of "miracles." Convincing parents not to resuscitate their preemies? You've mentioned Helen Harrison as a "Pioneer"- of what? Shouldn't the objective be preventing prematurity- and isn't that what the March of Dimes is for? And why(yes, I've read through everyting in your blog)- do you/your readers dislike the ambassador families w/ good outcomes.
Please don't take this post as a flame against you or your movement- it isn't. It's not that I disagree, it's that I don't understand.
I guess I just think the parents should have the final say in saving their preemie.-Anna"
Thank you so much for the manner in which you asked your questions. Most of your questions have been asked before, not usually as nicely. So, thank you.
Below are the items that I feel need to be changed, with regard to neonatology and the media...
Stop telling parents that their preemie will catch up by age 2. This is simply not true for many kids.
Start being honest about the LONG term issues related to prematurity.
Stop using studies that ONLY follow preemies until they reach age 2 or 3.
Start conducting studies that follow preemies through elementary school and beyond.
Start giving parents the option for pallative care.
To the media:
Stop portraying the birth of extremely low birthweight children as "normal".
Start featuring stories of older preemies, and their families, who are living with the day to day issues related to prematurity.
I have been on various preemie groups for 8 years. For many, they've been told that their preemie will catch up by age 2, only to be slapped with reality when their child's 2nd year passes and they are either behind their peers or very different than their peers.
In both the media and medicine, the long term issues that preemies face are largely ignored. On groups geared towards older preemies, a parent will join and you can almost always guess what questions they will be asking. It will either revolve around severe behavior, social differences or sensory issues. Parents are wondering what they did wrong, only to hear that they are not alone and their child's issues are, in fact, extremely common.
As far as MOD goes, they have brought a lot of attention to prematurity. And, I do not dislike the Ambassador families (we were one of them) with good outcomes. Where my problem lies is in the age of the ambassadors they choose. Preemie babies should not be used. How can anyone say that a preemie baby is "normal"? They are too young. The media prints their stories and shows them as coming out of prematurity unscathed. When older children are used, the parents are either not allowed to be honest (because it seems depressing) or the parents choose not to be honest (because they are dealing with their own emotions). It all relates back to how preemies are portrayed.
Helen... I have nothing but the utmost admiration for her. She has been talking about the "hard to talk about" subjects within prematurity for years. I first learned of her while Paige was in the NICU. Hubby and I were given her book and it was comforting to be able to read about all of the subjects that the docs were trying to shield us from. Docs would use terms like NEC and PVL and then, in the same sentence, say "you don't need to understand this now. We'll let you know if you need to make any decisions." We would open Helen's book and become educated about the problems that OUR child was experiencing. We could then have level discussion with the doctors and make our own decisions on care.
Once I joined some on line preemie groups I was thrilled to see Helen posting. She would answer questions and post the abstract to studies that were being published. I learned so much. Some people were not as receptive. I never understood their complaints. Parents would scream and call her negative and say things like, "she just doesn't want any preemie to be saved." I would sit quietly and watch it all unfold. I never spoke up.
As Paige got older and we got a really good handle on what long term issues we were facing, I started speaking up when parents were rude. I was so afraid that Helen would choose to not be a part of the lists. I valued the information she was giving and it had a direct positive impact on the way I was able to care for my child. Due to speaking up, there were a few parents who took out their frustration on me. (I learned to grow thick skin, very quickly-lol) A few years later one of those parents emailed me privately and apologized for her behavior. Her preemie was older and had many of the long term issues that Helen had reported on.
I am thankful that Helen is vocal about prematurity. Many are helped because of her strength.
Since starting the blog I have received many private emails from people who know me from various on line groups. They do not feel comfortable posting about their child's issues but are glad that we are being open and honest and they now know they are not alone. If it wasn't for Helen speaking up, I would have never found my own voice. I am very grateful.
I am also grateful to all who comment here. You received some comments from other parents when you posted your comment to me. I will be copying them under the comments for this post because I feel they are important.
And, as far as parents having the final say in saving their preemie... I completely agree with you. But, they need accurate and honest information before they can make that decision. I hope to be one of many outlets for that information.
Again Anna, thank you so much for being kind in the way you asked your questions. I wish you much luck in medical school. Please feel free to come back and see us again.