Sunday, November 18, 2007

How Much Should You Tell Your Preemie?

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.


Malia said...

Well informed children can add so much to their medical care! When my daughter was having problems with asthma (2nd and 3rd grade), she was able to tell the school nurse what medication she was taking and when she took it, and thus be an advocate in her own treatment. Several years later, I was with a teen having an asthma attack, and she knew NOTHING about what she was taking, other than she thought she brought the wrong inhaler! (She called them her "big inhaler" (azmacort?), her "blue inhaler" (serevent?) and her little inhaler (albuterol).) Yes, the teen was ultimately fine that evening, just needed to be out of all of the excitement of the church lock-in she was at.

Ultimately, it is up to the parent to know how much the child can handle, though.

medrecgal said...

I commented on this from your previous post, but I had more to say when I read about your theory regarding how Paige might have learned to "edit" the story. Although I always knew about my birth history through my family and there was never any shame attached to it through them, when I got to junior high and it all hit the proverbial fan, that was a different story entirely. School age peers--no matter their age-- can be rotten little creatures when it comes to your quirks and differences.

I was thirteen before my birth history became a daily fact of life (long story, let's just say educational bureaucracies can be completely clueless); but when it did, it hit full force, and in a way that was perfectly obvious to my peers. The questions and the teasing were relentless for the rest of that school year and into the next one before they lost interest and finally left me alone. I learned a lot about the general nastiness of teenagers and the way "authorities" can be so absorbed in their own rules and regulations that they do things that hurt the little guy.

I got really good at "editing", and I still find myself doing this. Even just the other day at a job interview I was having to explain little bits and pieces about the nature of NLD (I didn't describe it specifically, however) and its potential effects on a new job. It never really ends. You just find ways to handle it and move on, I guess.

MommaWriter said...

This is an interesting topic, just because there are so many different facets to it and it all depends rather heavily on what the situation is with your preemie. I think it's awesome that Paige can recount a good portion of her medical history when necessary. You never know when that kind of knowledge may be extremely valuable to her.

I feel like things are a little different for my two preemies. First, they're still pretty young. My oldest is 5.5. We've never made a secret out of their early births, but we haven't made a big deal out of it either. They've seen the photos, but they don't know what they really mean. I don't intend to show them the photos as a matter of practice, but I wont' hide them either.

Both of them were released from early intervention and the preemie follow-up clinic with "no problems". So, they don't have a whole lot of doctors visits. There's rarely a need to recite their medical history these days, although I still write it on all sorts of forms for special ed or school registration. (It still makes me teary to write!)

By the time they're teenagers I hope they'll at least know that they were preemies and had CLD. That could be important information for someone to know. On the other hand, I hope they'll never use that information as a crutch of any sort.

If it helps them understand why they're not as good at something, fine. But I don't want either of them to assume they *can't* be as good at something as anyone else can.

My son (5.5) is now getting copious amounts of speech therapy for a stutter. It's so bad, he can barely communicate sometimes, even though he's a bright little kid who is, according to his teacher, right at grade level for kindergarten.

I strongly suspect the speech problem is a result of neurological injury during his birth or in the NICU. I will probably never tell him that...unless some miraculous brain treatment becomes available. Stuttering is generally considered a neurological abnormality these days. That's all he really needs to know.

Similarly, I won't tell his sister (3.5) that whatever brain injury her brother might have, she should have had in spades. I won't tell her that she was born dead and had to be revived and that it seemed like it took forever. She was a 31.5-weeker, but still had a brain bleed from the inexplicably awful delivery.

I say that now and that's my plan for the future, but if I find that my daughter gets to junior high feeling like she's a dummy because she can't do math or can't spell, maybe I'll let her in on some of that information. At 3.5, she thinks rather highly of herself. I hope it continues that way instead! : ) Goodness knows, it's not a quality her mommy had growing up!

Stacey (the one with the 'e'...or at least one of them!)

terri w/2 said...


I guess until you had brought this up in your blog - both before and this time, I had not considered NOT telling my daughter (one of twins) about hers and her sister's prematurity. It's always just been a fact of life for us - perhaps it's because her twin's issues are so severe, there's no denying that something huge happened. .

Anyway, interestingly, when my daughter was about 13-14, and they were having the reproduction talk at school, the school nurse apparently really harped on drugs, smoking, etc being the cause of prematurity, and my daughter corrected her! I was so proud of her! The nurse immediately backed down and said something like, "why yes, there can be many reasons for prematurity." My daughter has been a great advocate for herself in the medical setting as well. There is no way she could be if she didn't know about her past medical history!

Just recently my daughter asked for her neonatal medical records, and I happened to have her discharge summary here in an old file. It was pretty upsetting to her to read about the difficulties she encountered in such an "objective" matter-of-fact manner. I had to explain that this is how medical personnel document things.

Currently I'm working as an ER RN, and we often have people come in that are not familiar with their own health issues, or what their meds are - it is very frustrating, because then it's starting from square one - looking things up, trying to piece together the puzzle. Everyone, in my opinion should know their own medical histories and become self-advocates as soon as able.

The Preemie Experiment said...

malla wrote: "Ultimately, it is up to the parent to know how much the child can handle, though."

I completely agree! And, hopefully parents are giving some thought to it, not just withholding info because they want to pretend it never happened.

Anonymous said...

An interesting post that gave me plenty to think about... My DD was born at 29 1/2 weeks, weighing 1 lb 14 oz. She is now 6, but has known since she was quite small that she was sick when she was born and spent a long time in the hospital before we could take her home. When at places like Toys R Us, we like to show her the difference between the 13" dolls (close to her birth size) and those the size of her FT brother at birth. She thinks its cool to drive past "her" hospital, when we go to the city where she was born. She loves to look at the tiny diapers and hats. In other words, her birth story has been no secret to her. She has been as healthy as a horse to date, with very minimal preemie-related issues, so this knowledge interests her, but I don't think it affects how she views life. Her school has no idea she was a preemie. After reading some posts here, I am wondering whether they should. In her first grade class, each student gets to spend a week as "star student". They get to bring in stuff to share, including pictures, if they want. I had been considering suggesting DD include her baby pictures and her tiny diapers in the presentation, but now I don't know if I want her to or not. Good thing I have until February to decide...


Susie Korbel said...

I really wish that I had been told. I had no idea that I was born early until fairly recently. My mother instead chose to focus on all the positives about me (high IQ, no physical issues, etc) and failed to consider that I might have future issues related to my prematurity.

It hit me really hard emotionally when I was diagnosed with LD, including ADD/inattentive and nonverbal LD. I felt like a failure since I'd always been put forward as the other end of the spectrum. I still do in a lot of ways, whether it's a reasonable feeling or not.

At least if I'd known that I could have had the possibility of issues, maybe I could have gotten tested earlier so that I wouldn'tbe struggling so much in my sixth year of finishing a three year university degree. I was only diagnosed this year and it made so many things become painfully clear to me.

If I have a preemie (although I am praying not to of course) I want to be open and honest like you are being with Paige.

Anonymous said...

I think that every child is different and only the child's parent can make a decision on how much to tell and when to tell it. People who criticize you for telling Paige her history do not know Paige and cannot make decisions over what she can and cannot handle. They should mind their own business. Personally, I intend to tell my child whatever he wants to know. While our experience with the NICU was nothing like yours, it is a part of his history and he deserves to know...

buddhist mama said...

Thanks---I went back and re-read the earlier post as well. You said that while Paige always knew about her medical complications, it was only a few years ago that you related it to her prematurity. Can you elaborate a bit more on this?

THANKS for the honesty mommawriter and Susie Korbel. It makes me think that I will tell my kids as much as possible once they start kindergarten---so that they can be proactive with their teachers and get the help they need...

My own views are changing as my 26 week twins are growing up---they are now 3 and half and absolutely fascinated by medicine. They play doctor almost every day, 'fixing' their stuffed animals who usually have stomach aches and the like. But yesterday, they were talking about giving their bunny surgery and I laughed but also wondered whether they are ever processing NICU experiences they remember in physical if not cognitive terms. I do think they have somatic or bodily memories of their NICU time and that these have lasting influences.

I have a grainy black and white picture of my twins in the NICU hanging in my office. It shows them both on my chest with their feeding tubes and nasal canula. My daughter Tashi asked about the picture the other day and I told her that she needed some help breathing and eating in the NICU. But I left it at that.

Whenever we chat about her NICu experience---and it is mostly my daughter who is interested---I wonder how much and how soon to tell her? Especially if she is not asking....

terri w/2 said...

Buddhist Mama;

Perhaps it's a little like the sex talk? When they ask is a good time to tell them - but only at the age level at which they can process might be a good rule of thumb. KISS (keep it short, simple).

In our situation, there were clearly such major issues going on in our household - cerebral palsy, mental retardation, massive seizures, on-going therapies - it was always discussed that these things were prematurity and neonatal related difficulties. If there had been NO issues, I'm sure that we would not have been discussing this as we had been. However, when asked, we certainly would have told them the facts. It certainly sounds like you're on the right track!

Long Term Listener said...

From my 12 year old son's perspective, he has no interest in who he was, only who he is now. He knows his past but he has said that I am not discuss it. He has seen the photographs and does not want them around.

From the POV of appointments, he runs them, treatment is decided in conjunction with him and his medical teams, unless it is an emergency. What I hear from our children, as with other children who spend too much time in hosital, is their firm advocacy of childrens' rights. Excellent!

buddhist mama said...

terry w/2,

Thanks for the advice. Speaking of sex talks---we are talking a lot about reproduction around here, as i am pregnant and writing a book about birth. My 3.5 year old twins picked up a german cartoon book about birth and reproduction at their grandmother's and ask me to read it as a bedtime story almost every other day. We have covered the male/female genitals, eggs and sperm, conception, (skipped over sex I admit), the placenta, the umbilical cord, and how a baby grows in utero and gets born.

I have told them they were born early and in the hospital---but I wonder whether they will simply assume that their birth is like the one I am hoping to have this time around. I'd like them to feel that, bt I don't want to keep them in the dark about their own birth. Does anybody have more advice on what to do when one sibling (or set of sibling) is premature and the other sib is not, or at least less premature?

Helen Harrison said...

We *would* tell Ed (age 32 years) about his early life if he could understand any of it, and if he were interested. He can't, and he isn't.

He is distressed enough just hearing words in television commercials such as "9 out of 10 doctors recommend..." or "the miracles we work at Children's Hospital..."

He starts to wail when he hears such things, "No doctors! No hospitals!"

And so we try to keep medical discussions of any kind to a minimum in his presence.

Anonymous said...

"Does anybody have more advice on what to do when one sibling (or set of sibling) is premature and the other sib is not, or at least less premature?"

Only having 2 kids, and the older one a preemie, I obviously don't know how I would have prepared a non-preemie for a new sibling. My DD was 4 years 5 months when her FT brother was born. Maybe it is because DD has very slight preemie related issues, but I don't think that she really "cared" that he was not a preemie. We purposely did not take her to the 20 week ultrasound, in case there were similar problems with him as we had with her. At the 33 week ultrasound, which was obstensibly to check growth but really just for my peace of mind, we did take her, so she could start getting used to the new arrival. I do think DD was a little surprised that her brother did not have to stay in the hospital longer than 4 days, since she did (2+ months). Thinking on it, though, the only real impact that DS's birth seemed to have on DD was a renewed interest in seeing the tiny diapers/hats/pictures, etc. again. It did not bother her that her newborn things were so different than her brother's. Of course, if DD had some larger issues that came from her early birth, maybe she would have felt differently (i.e. that it was not fair she had to do something like go to a dr or therapist appointment, etc when he did not). I am curius what others' experiences on this issue have been...


Chris and Vic said...

Vic is like Ed. I doubt that Vic will ever initiate a discussion . . .

In the case of kids who do NOT initiate discussions (for whatever reasons), I think it is "natural" to look at albums from time to time, and ask the child "Do you know who this is?" when looking at baby pictures. If the child can recognize him/herself, this may trigger other questions. If s/he cannot recognize themselves, this may also trigger questions.

Telling them about themselves and their premature beginning is one thing. Telling our kids about OUR OWN emotional responses/anguish is another thing. Emotional responses/anguish can be contagious.

Also, I think Susie K's question is a tough one. I would be hesitatnt, as her parents were, to tell her she MIGHT have future issues, for fear of setting her up for failure. Susie, your LD, possibly the result of your premature birth, can be viewed as "just another obstacle" to test your mettle, your perseverance, your indomitable spirit. Getting through to your degree will be hard-won, but you will value it all the more for the hard work you had to do. (I am assisting a nursing student right now who is at the tail-end of middle age, and has gone back to school--she is just now becoming aware that she has some kind of LD and needs accomodations. She is struggling, but getting stronger for it. I admire her and you and anyone else who pushes through . . . Kudos!)

Chris and Vic

Helen Harrison said...

I apologize if this message seems slightly off topic -- although it does have to do with telling about the NICU experience.

A neonatologist friend has asked me to post this message where families, former preemies, and professionals can see it. And I can't think of a more articulate and experienced group than the people who come to this blog.

Hope you can help!

Your short stories, essays, poems, art, etc. from the neonatal intensive care unit.

FROM FAMILES: Parents, siblings, grandparents, survivors and others

PROFESSIONALS: Doctors, nurses, PAs, NNPs, Therapists, others

For possible inclusion in a book. Send submissions and contact information to:

Gerald B.Merenstein, MD
Professor of Pediatrics
Medical Director, CHAPA Program
UCHSC @ Fitzsimons
Building 500, Room 7019
13001 East 17th Place
Campus Box F543
P.O. Box 6508
Aurora CO 80045
FAX 303-724-1350

Nancy Brown said...

I personally don't see how to KEEP it from Ty. Our house is decorated just like any proud mom with pictures of him as an infant. ( we had 2 professional photoshots in the NICU) and he has been in several articles regarding his prematurity. He has been featured in medical journals because of his repeat craniosynostosis that is all preemie related. I have no idea how to do anything else but to include him in his medical world when it is such a part of who we are and how we deal. How can you ask him to leave the room as we go through scan of his brain with the neurosurgeon. I don't havea shunt. He has to tell me what is going on. I don't see how keeping it from them is beneficial for you or for the docs. Guess I live in a different world than others.

I would have hated for my mom to talk to my doctor about my lack of menstrating without me there. Or for my husband to know my medical history and me not. It just doesn't work that way I guess. Why keep it from Tyler


Helen Harrison said...

Ed is, of course, always fully present for his doctors' appointments. Although sometimes the doc and I will speak in "code" about things like "blood tests" or "procedures" "or "surgery."

Except on the most basic level, Ed simply can't understand, and becomes very upset when he does get the idea that something medical is about to be done to him.

Ed weighs 170 pounds and trying to wrestle him struggling and hysterical from the 17the floor of a medical building and across the street to the admissions desk of the hospital is not something I want to contemplate.

That's the world we live in.

terri w/2 said...

One of my twins, also is mentally disabled to the point of "profound mental retardation" - at age 21, functions at a level of 14 months approximately. (Former 25 weeker, bilateral grade IV IVH). It is weird though how she gets into a medical setting and gets a worried look on her face. She too, is present at all medical appts, but due to her severe retardation, is unable to voice an opinion or understand what's about to happen -she is unaware of her medical history due to her MR. It's not that we've hidden it from her, but her level of understanding is at an infant level.

Her twin however, we've never hid anything from her, and at an early age, was encouraged to participate in decision-making and self-advocacy in not only the medical setting, but school as well. She is well aware of her prematurity and resultant issues.

Bec said...

Before Erin was born DH and I talked about how we wanted to raise her and decided that we wanted to be open and honest about everything with her. So, for us, there's no question that she will know how she came into the world and how strong she was to STAY in the world.

I don't want her to feel ashamed or like she did something to upset mummy and daddy so we will make an effort not to be emotional when explaining her medical history

Lindsey said...

Hello there...I just came across your blog..and browsing your links. Do you have any recommendations as far as good websites to turn to about preemies? My son was born at 34 weeks completely unexpectely. We spent just over 2 weeks in the NICU and as of now he is doing great. I'm nervous as to what may come and want to be prepared. Please help. Thank you. LmLarrison/

medrecgal said...


I can totally relate to your commentary about "he has to tell me what's really going on"...and in that exact context, too. I was always the one explaining all the fancy words used, asking all the right questions, etc., because my parents weren't the ones living with a shunt and they couldn't really know. It helped that I had a natural curiosity about such matters anyway, but part of being an informed patient is knowing how your body works and what the signs are that it may not be quite right. So if that's possible, it's quite useful to physicians.

It was kind of strange to actually get a look at the inside of my own brain, though...because it explained a lot.

IMHO, hiding this kind of stuff from a child has the potential to cause unnecessary problems for any of a number of reasons. And as you implied, sometimes that's just not reasonable or possible.

The Last Spartan said...

I was about four or five. I wasn't sure if it was to explain to me why I was more clumsy than the other children. My parents always made it sound like I was their hero. Maybe that's the best they could do.