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advice on how/when to tell your child about their upcoming surgery?

My son is almost 3 and is due to have super hip/knee surgery in June. I am really struggling with what to tell him about his surgery. I don't want to scare him with too much information, but I also don't want to risk him waking up from surgery in the spica cast wondering what happened to him ( I know that he is going to freak out about the cast ). I know that a lot of you have been through this, or will be at some point, and I am hoping that you can share with me ANYTHING that might help make it easier. I have been telling him that we are going to help "fix" his leg, and that sometimes he might have a "boo-boo" because of that. I am just not sure what to do...I have been crying myself to sleep for weeks now just thinking about him having to go through all of this ( I know it's sometimes worse for us as parents). I hope someone has some ideas for me!! Any information about your experience with the super hip surgery will be greatly appreciated!! Thanks! Jen

We didn't go the surgical route, but here are some people who have recently had the super-hip surgery or wrote about going to have it soon.

http://www.pffd.org/user/162
http://www.pffd.org/user/88
http://www.pffd.org/user/111
http://www.pffd.org/user/220

Also, you might find this post helpful. http://www.pffd.org/node/326

Cheers,
rar

Jen,

My daughter had the super hip/knee/ankle surgery when she was 26 months old. At that age, she didn’t really understand much, but we prepared her the best we could by reading books to her. The best book I found was “Going to the Hospital” by Fred Rogers (Mister Rogers). It has a lot of great photographs that talk about going to a hospital and what might happen while you’re there. It’s one of our favorite books to read.

My daughter is almost 4 now and she will be having her first lengthening surgery this Friday. Since she is older now, she can understand more. Two weeks ago we went to the hospital (where she will be having her surgery) to have her pre-op appointment. The day before, I started talking to her about her surgery. I told her that she will be having an operation. The doctors are going to put some metal on her leg. That metal was going to help make her leg grow longer. We even practiced saying “external fixator”. About once a day or every other day we have the same conversation. I listen to her questions and try to answer them in ways she will understand.

After her pre-op appointment, the hospital took us in a brief tour of the surgical floor. Then they did medical play with her. They let her play with real medical equipment (anesthesia mask, IV tubing, medicine cup, medical tape,…) so they wouldn’t seem so scary during her hospital stay. My daughter has one of those Fisher Price doctor kits. She plays doctor and nurse a lot with it. My husband and I are constantly getting checkups.

You could tell him that he will be getting a cast and that he won’t be able to walk for awhile, but that after his leg heals, he will be able to walk better. You can tell him that he will be going to the hospital. The doctors and nurses are going to help him to fall asleep. And when he wakes up he will have a cast .You should be able to pick the color for his cast, so you could talk to him about what color he wants. When you are watching TV or out on errands, take those opportunities to talk to your son if you see someone with a cast or walker.

I hope this helps a little.

Beth
bethreinert@yahoo.com

Beth has great advice that we also did to help our son when he had his first lengthening surgery last year. We bought several books from Barnes and Noble and also online. We also took him to Build a Bear and let him pick a bear to stuff. We bought the hopspital outfit and all the things that went with it (crutches, etc. ). He held it when they took him back for surgery and the bear was there on his bed when he woke up. I think just talking to your child about it will help also. Good Luck and we wish you the best.
Staci

I love these ideas for preparing a child for surgery! I have been on both sides of this situation. I have been there as a child (who had over 20 surgeries) and I have been there as a parent trying to prepare my child for surgery.

I can only think of two things to add to the discussion so far. First, never surprise the child by telling them the morning of surgery or on the way to the hospital. Many parents take this option to reduce their child's time to "dread" surgery. However, it has been my experience that it reduces the child's trust in the parent and causes long term anxiety that this "surprise news" could come again. Suddenly shopping trips become anxiety filled since the special trip can be to the same town as the hospital.

Secondly, while you are preparing your child, prepare yourself. Pack snacks and bottled water or juice. Consider packing a laptop with headphones and a good movie or take a cassette player with a book on tape. Pack a book which you have not read that you believe is riviting or a magazine that you have never opened the cover. If you knit or something like it, take it along. Put in some great smelling hand lotion (okay maybe not an idea for dad's) and your favorite pillow. Many times you can use these items with your child too by having a favorite movie or children's tape for them to focus on while they wait. After surgery sometimes children cannot be held without causing pain so "mamma's pillow" that smells like her perfum has a nice full body hug feel.

I totally understand what you are going through! The amount of info you wast to give your child totally depends upon his level of understanding. I totally agree with the previous comments. You need to prepare well in advance. Child play really goes a long way! What hospital are you going to? Do they have a child life department? When my daughter went through her first surgery they were a wealth of information on haw best to prepare my child. Comfort items help tremendously! Really try not to focus on the 'owie' issues but do let him know about the cast (yes this is a bit scary). Just be ready for lots of questions :) I hope this helps. The best thing is to be open with your child.

NC Mom
We prepared Nicholas for his surgeries (and expectation of Spica cast) by talking it through with him, reading books about going to the hospital ahead of time and pretending that his stuffed dog was going to have the surgery. We pretended that the dog got a cast which he helped us put on him (made it withcardboard parts for legs with masking tape and file folder pieces) and we took care of him. Nicholas has had numerous hip surgeries (5). We also tell him how special treatment is at hospital (he gets to drink sprite and eat ice cream after surgery) and we bring lots of toys and books to read to him (familiar books he loves). We also snuggle a lot and have lots of quality time in the hospital, so the whole things seems more like a fun, reward and family time (than the reality of surgery). My son dealt well with the pain when I sang to him (music is good, even if you prefer to bring a soothing cd and player or something).

I hope your son’s surgery went well.

I know that it’s too late for your son, but I thought of another way to prepare kids for surgery.

Have the child (and parent) watch Arthur (a PBS children’s cartoon) episode “Operation D.W.” from 2006. I remember watching this episode for the first time just before my daughter had her hip surgery. It’s on PBS every so often. They showed it again today. It’s about Arthur’s little sister getting tubes in her ears. This obviously isn’t as major a surgery as pffd patients get, but how DW prepares for surgery is pretty accurate for anyone getting surgery. They show her being anxious about the surgery, going to a pre-op visit, and even fasting before surgery. It’s appropriate for all ages.

Beth Reinert
bethreinert@yahoo.com