Buddhist Mama wrote: "Speaking of which, can we have a post on this topic TPE? When do many of you out there tell your children about their prematurity? Particularly if they would have no other way of knowing---ie. by the time you tell them they no longer have tubes/oxygen monitors/etc. Yet, many, may have sensory issues that they might understand and appreciate better with the knowledge of their prematurity. TPE often mentions this when she talks about Paige being her own advocate and empowered by knowledge.While I am fully a 'knowledge is power' advocate, at this point, I can also see the other side. I have not spent a lot of time talking to my 3.5 year old twins about their prematurity because I don't want to pathologize them or make them feel bad about themselves."
I want to start the discussion with this statement...
Talking (or not talking) to your preemie about their premature birth is a personal decision. It is one that is made based on individual circumstances. I'd like to ask everyone to share their experience but please do not criticize others for their decisions.
I've covered this topic before. You can read the post here.
We have never sat Paige down and told her the entire story of her premature birth. Why? Because she has always known what happened. From the first doctors visit on, we have never sent her out of the office when we've given her history to the nurse/PA/med student/doctor, etc. She is present from the beginning to the end of the visit. She is an active participant in her care. She is not the one with sole control, but she does have a say in the decisions of her care. We feel that it is her life, her body and in turn it is her that has to endure the tests and treatment. And, for the past few years, it has been Paige that answers all of the doctors questions. If she isn't sure of an answer then she looks at me and either I answer or I give her a hint to spark her memory.
One thing I should mention... When Paige was young and it was time to give history, if I was feeling over emotional about her birth that day (it happened many times in the beginning) then hubby gave history (and I did it for him some days). I never wanted Paige to feel that emotion. Her birth, and subsequent NICU time, was hard for us but she doesn't need to see how much heartache it caused us all. As she got older she started asking questions about how we felt during that time. That was when I talked to her about the emotional side of it all, but never during an appointment.
We also never lie to her or try to soften the blow. If she is going to have a test and it may hurt, we tell her. We explain the test, forward and backwards, and tell her how long the painful parts may last. Even something as simple as an upper GI. When she was 4, and refusing to swallow the barium, the nurse said, "it tastes like a vanilla shake." . Paige was upset because hers did not taste like a vanilla shake. After I told her, "Paige it tastes like eating yucky chalk but you have to do it so the xray machine can see inside of your tummy." she drank it right up. Truth... that's all she's asking for.
If we are at an appointment that was just supposed to be a simple exam and the doctor decides to do a test where something may hurt, we let her decide (if possible) if she wants it that day or come back the next day. We never tell her that she can decide to NOT have the test, but she does have some control. After all, it is her body.
When she was 5, and very sick, we had to see doctor that was not her regular pediatrician. He had her lie down and told her that he just wanted to look in her nose. From behind his back he pulled out a swab and stuck it into her nose and into her sinus cavity (to check for flu). To say she freaked out would be an understatement. If she hadn't been so sick I am sure she would have sat up swinging. She was angry with me because I hadn't told her that it was coming. Even after I told her that I didn't know it was coming either, she chose not to speak to me for the entire day. She was devastated and I couldn't blame her. If a doctor had done that to me, I would have been upset too.
From that day on, Paige starts every doctors appointment with the following statement... "Please tell me what you are going to do to me, before you do it." And after seeing another doctor who jammed the back of her throat with the tongue depressor, she has now added, "I can open very wide so you don't need the stick." to her opening statement.
Before anyone judges us on how we've raised Paige, you should know that we came to this decision by hearing from adult preemies and how they felt.
Paige can talk to any adult or medical professional but as far as Paige talking to her peers about her early birth, that is a different story. She never used to have a problem with it. If you read my original post on the subject, it started out with me observing her talking to her classmates. She was fine with the discussion. That was during the last school year though and something seems to have changed. I think a boy in her class made fun of her and now she keeps it to herself. It's not that she is embarrassed about her early birth, but instead it seems as if she is learning where and when it may be appropriate to tell her story. She seems ok with that and so are we.
So, that's our story. And, as I said in the beginning, it was a personal decision to always include Paige when giving her history. It was one that we made based on hearing from adult preemies who had very different experiences. I hope everyone will share their feelings on this subject, including the adult preemies. After all, it is their voice that can give us a glimpse into the future.