when/what to tell DD4 about her impending surgery

[L&L]

Lula is having open heart surgery this summer. I am not sure what to tell her exactly and when. Should we start talking to her about it soon to prepare her and let her get used to idea, or just go to the hospital for a 'Drs appt'? We will be there for 4-5 days and she will have a scar, very sore breastbone and drainage tubes when she wakes up. When she heard us discussing the surgery with the cardiologist after her testing she asked: Do I have to have surgery? What is surgery? I just told her the doctor was going to fix a boo boo on her heart while she was sleeping. That is holding her for now, but I know the minute she starts to really consider it she will have a million detailed questions. She is extremely intelligent and inquisitive. When we told her about me being pregnant the questions started a few days later after she had some time to ponder the situation. (How will the baby get our of your uterus? How will the baby fit through your vagina? Is the vagina the same place where poop comes out? Is your uterus the same place that your food goes when you eat? Does the baby pee inside of you? Can it hear me? Does cutting the umbilical cord hurt the baby? and on and on) With the pregnancy I took a very matter of fact/ scientific approach and she now probably knows more about the female reproductive system/childbirth process than most adults, lol. Anyway, the prospect of this surgery TERRIFIES me and I am trying so hard not to let her see my fear, or see me crying. She does already know a bit about the circulatory system(thank you They Might Be Giants!) and the heart, so I am expecting questions like: How will the doctor get to my heart? And why won't I wake up? and how will the blood carry nutrients and oxygen all over my body if my heart has a boo boo? Should I get her some children's books about hospital stays? I just don't know how to handle this. What do you guys think?

[Bean]

When Eric deployed we debated on how early to tell the kids. Lorelai is a worrier and we knew it would just be an added stress that she didn't need, but Griffin would freak if we waited too long and sprung it on him, so we waited until it was just a few weeks away before casually bringing it up. As it got closer we explained it more and more, never making a big deal about it but giving them dedicated time to ask any questions. Every kid is different in how the handle stuff like that, you know your girl best and I'm sure you'll make the right decision, whatever you do. I know the situations are totally different, but I hope that helped!

[Lindsay1]

It is so different for each child- how much information they can handle, and how far in advance. It seems like your DD needs to hear enough facts and to have time to process it. If it was me, I would probably start talking about it a week out, and I would get a couple of books for children about surgery. My DD does well with books. Good luck- what a difficult situation.

[DucksLikeRain]

Check with the cardio surgery office. When Scharae was being scheduled for her tonsils and adenoids she had a ton of questions. She didn't believe me when I told her the doctor was not going to take her head off to get to her tonsils and then sew it back on. She couldn't grasp the concept of there being tools made to do the surgery until the ENT surgeon sent us a book made just for that situation. I'm sure the cardio should have something similar. Basically a social story about the heart and the surgey basics and the end result, including the scar, tubes, hospital stay, etc. Lula can't be the first kiddo they've had who will want/need more details!

I would answer her questions with as much detail as she needs, while still keeping it at a minimum. Basically I wouldn't address the what-ifs unless she brings them up. And even then with a basic answer. If she's got the language skills you could also direct some of her questions to the doctor "I don't know but let's write that one down so we can ask Dr. Xyz at the next appointment." That might be a good thing to allow her to communicate her worries or fears to someone other than you. Both my girls are highly intelligent and inquisitive and it sometimes takes the same answer from someone they know is an "authority" on a topic to make them feel like they've got accurate info.

As for when-if you have any pre-op appointments coming I'd broach the topic with her before them so you've had a chance to field some of her questions and see what directions they're going, in case you need to get any more information from the doctor to be able to keep answering. When my daughter had her MRI we talked a lot about how still her body had to lay and for how long. Then we "practiced" and she very quickly saw she was not able to stay still for 45 minutes while awake. So she asked me if she should maybe take a nap while they took the special pictures of her back. I told her I thought that was a good idea and that the doctors have special medicine for helping the body take naps when you're not tired, and about the tubes they can give you water and food into while you're sleeping so your body doesn't get weak. This made the anesthesia/IV process so much easier for her-she felt like she had come up with the idea, it made sense to her because of our exercise demonstrating her inability to lay still long enough, etc.

[cheeksy]

Check with the cardio surgery office. When Scharae was being scheduled for her tonsils and adenoids she had a ton of questions. She didn't believe me when I told her the doctor was not going to take her head off to get to her tonsils and then sew it back on. She couldn't grasp the concept of there being tools made to do the surgery until the ENT surgeon sent us a book made just for that situation. I'm sure the cardio should have something similar. Basically a social story about the heart and the surgey basics and the end result, including the scar, tubes, hospital stay, etc. Lula can't be the first kiddo they've had who will want/need more details!

I would answer her questions with as much detail as she needs, while still keeping it at a minimum. Basically I wouldn't address the what-ifs unless she brings them up. And even then with a basic answer. If she's got the language skills you could also direct some of her questions to the doctor "I don't know but let's write that one down so we can ask Dr. Xyz at the next appointment." That might be a good thing to allow her to communicate her worries or fears to someone other than you. Both my girls are highly intelligent and inquisitive and it sometimes takes the same answer from someone they know is an "authority" on a topic to make them feel like they've got accurate info.

As for when-if you have any pre-op appointments coming I'd broach the topic with her before them so you've had a chance to field some of her questions and see what directions they're going, in case you need to get any more information from the doctor to be able to keep answering. When my daughter had her MRI we talked a lot about how still her body had to lay and for how long. Then we "practiced" and she very quickly saw she was not able to stay still for 45 minutes while awake. So she asked me if she should maybe take a nap while they took the special pictures of her back. I told her I thought that was a good idea and that the doctors have special medicine for helping the body take naps when you're not tired, and about the tubes they can give you water and food into while you're sleeping so your body doesn't get weak. This made the anesthesia/IV process so much easier for her-she felt like she had come up with the idea, it made sense to her because of our exercise demonstrating her inability to lay still long enough, etc.

This. I can't imagine what you must be going through emotionally. Especially as adults we have seen/heard/imagined so many various scenarios that children are free of. So knowing the details usually wouldn't scare them (if explained in simple words without fuss put into the words). All should point to the fact that it is needed and it will make her better. She should see that you believe in this and she will too.

[heatherk]

I'm going to look for some resources for you later (if I can remember). DD had open heart surgery at only 4 months old, so she was obviously not aware of what was going on then, but we got lots of resources from different groups. One had a great coloring book in there talking about going to the doctor, tests they do, etc. I'm sure it must have included surgery. Anyways, I'm sure you can get some resources from them on their website, I just can't remember the name of it right now.

I think I'd definitely talk to her about it, on her own terms, though. DD has a follow-up echo this summer and we're already preparing her for having the doctor 'take a picture of her heart' since this will be the first time that she's old enough to get it and also the first time since she was a newborn that she won't be sedated. She knows she had surgery as a baby and proudly points to the scar on her chest and will tell you that that's where the 'doctor fix my heart!'

Having a 4 month old going through this is much different than a 4 year old, but I have been there and I know how much it sucks as the parent! Please feel free to pm me if you have any questions.

[3andMe]

My 4 1/2 year old DS just had surgery 2 weeks ago. I told him a month ahead of time he was going to have an operation, but didn't mention it too much. I told him it was going to fix the problem he had and make him better. There are Curious George and Madeline stores about operations, not very specific, but enough that he was familiar with the concept of going to the hospital and having something on the body repaired, kind of like a car that goes into the shop. I would occasionally talk to someone in front of him about how he wouldn't be in school for a week or we wouldn't be doing swimming lessons or gymnastics lessons because of his surgery, so he was reminded of it from time to time and knew that it was something that would affect his ability to do things.

I never, ever mentioned cutting, removing, blood, or changing body parts etc., even though I actually did go into a lot of specific detail the day before and the day of. In fact, the day of his surgery DS asked the nurse coming into the room if she was there to give him his midazolam (versed), which is a relaxing medication. I did say that he would have a bandaid or an owie or the spot where his operation was.

The night before, I talked to him about what to expect. I did not go into a lot of technical detail about how they were going to repair the hydrocele. I just told him that there was fluid in there, it was too big, and they were going to fix it so it wouldn't be too big in the future. He is a curious boy, but he accepted that. I spent more time telling him what to expect in terms of how his day would go. That he would spend the day only eating clear liquids (yay popsicles, yay jello!) until noon, and then he couldn't have anything until 4 pm. That we would go to the hospital and he would have to put on special clothes and he would have his vital signs checked and lots of different people would come into the room and talk to us and ask us questions. Before the surgery he would drink a little medicine that would help him relax and make him feel goofy. That he would go to sleep during the surgery so he wouldn't feel anything and he would wake up afterward in a different room and we would be there. That he would have a bandage and it might hurt a bit, but he would need to tell us or the nurse and we would give him some medicine to help him feel better. He would have an IV in his hand to help give him fluids and medicines. The next few weeks he would have to be careful not to lift or play too roughly or go swimming.

He did mention afterward that surgery was not as fun as he thought it would be. And he HATES the activity restriction. I keep catching him trying to lift things.

Anyway, you know her best, but I would tend to err on the side of less technical about the details of what is actually being done during the surgery. Also, ask the hospital if they have a child-life specialist department or someone that can help with this. They may have booklets for children.

I know I was a nervous wreck. I hope everything goes smoothly and her recovery is quick.

[AbbeysMom]

I haven't been there, I imagine it's incredibly nerve wracking as a parent to imagine your LO having surgery on her heart.

This book Franklin Goes To The Hospital looks sweet and informative, if your DD is anything like mine she might benefit from reading about the experience too.

[iMom]

I would answer her questions... I would have some visual aides and then some very positive reasons as to why this is needed, etc... I know with my DD and everything she asks I am very detailed, even when it is something sad or scary. For example, when my husband was in the hospital for pneumonia, I took pictures of DH hooked up to everthing, I walked through what was happening... and then when he had back surgery I did the same thing. For me, I needed her to understand at a level that she was interested in. I did not withhold, even though it was scary. It helped her think through what was going on, and understand why a hospital can be a good place to help people... and that the doctors were fixing daddy like an auto mechanic fixes a car. I did show her diagrams as well to let her know what the doctor was trying to fix. My DD is a smart girl, and very basic answers would not suffice. The unknown scares her more than being able to process it at some level, even if it is sometimes too much information.

we also do a lot of roll playing, with our hands as puppets... so we played through all of these scenarios. She really did understand and it gave her something to process and feel that she was part of what was going on, and helping by making a picture about her feelings... mostly scribbles with paint, but in her head she would tell me what something was, etc...

[heatherk]

Check out www.savinglittlehearts.com

They are the ones that gave us the care package at the hospital that had the coloring book. I just looked at it and it doesn't go into surgery, but talks about tests.

There's also www.littlehearts.org - there's a link on there about preparing your child for surgery.