What to tell siblings

[Kristin A]

Hi,
We have a 4 month old who is scheduled for heart surgery (Down syndrome w/ complete AV canal defect) September 3rd. We also have a 3 1/2 yr old daughter. Any advice on preparing our daughter? We are only 20 minutes from PCMC and Grandma will be staying with her at our house... should we bring her to see her brother?
Thx :) Kristin

[HollieGomez]

I really love the Child Life department at Primary Children's. You can take your 3 1/2 year old up to meet with one of the Child Life workers and they will be able to explain and prepare your daughter to see the baby after surgery. My son was 5 when my daughter had her surgeries, and he did really well after talking to Child Life. They gave him a buddy doll that had the same tubes and wires as his sister, so he felt comfortable when he saw her. I think that it relieved some of his anxiety as well to be able to visit his sister. Afterwards he told me that he understood why Mommy had to be at the hospital. You could probably even call the hospital and make an appointment with Child Life before the surgery or take her to one of the surgery prep classes to help her understand what is going on.
Good luck with the surgery!
Hollie
Mom to Ben (HH) and Elaina (ToF, pulmonary atresia, VSD, pulmonary hypertension, DiGeorge syndrome)

[cmooredavis]

I also would recommend the Child Life team. Our Jacob was born and had his surgery during RSV season so our two older girls didn't even get to see their brother until we brought him home. We did get the dolls Hollie mentioned and coloring books to bring home to our girls and it helped to understand better what was going on. Good luck with the surgery!

[4Hursties]

My son couldn't meet his sister until she was transfered from the NICU at LDS Hospital to a regular room at Primary. We had "the baby" give him a present after she was born and he went and picked a present for her. So even though they couldn't meet yet, they had something tangible to hold.

I made sure he understood that the baby was not more special than him, if he were in the hospital I would be there with him and the baby would be home.

There is also a pre-surgery class that explains surgery to patients and kids. Call and ask for the panda party. If you do the class, be prepared, most of the kids are in there getting ready for tubes. The nurse has no idea what your surgery day will really be like because she doesn't deal with the complex surgeries. My son was given lots of information that did not apply to our surgery, but he didn't need to know that. If he was told she would go to a wake up room and get a popsicle and watch tv, what was the harm really? Just be prepared for a well meaning mom to ask what surgery your kid is having and then not knowing what to say when you answer.

As for post heart surgery, we waited until our daughter was out of the PICU to bring my son up, but you will know what is best for you.

Good luck!

[HollieGomez]

I just thought of another thing that I did that made things a little easier before I let Ben in to visit with Elaina. I started this when she was in the NICU during RSV season, and he wasn't allowed to visit. We had a special teddy bear that I would take to the hospital with me. Each day before I would leave, I would have Ben put all his "loves" into the bear (kisses, hugs, etc.) and then take it with me. I made sure to take pictures of the teddy bear with Elaina to show him when I got home, and then told him it was all full of her "loves" for him. He would sleep with the bear at night to get all her love out of it and to ensure some extra love for her. It became quite the ritual, but I think it helped him feel like he was taking part in the hospitalization. We started out with a small bear in the NICU, but when she was in the PICU for so long last summer I took him to Build-a-Bear and had him make her a new bear. Hope this helps a little!

Hollie

[Jess]

It all depends on your older sibling and her level of understanding. I'm no child life specialist, and I would definitely check with them, but we've found that honesty has been the best policy with our older kids... We know Sam's condition is going to be an ongoing part of our lives, so we include it in normal family discourse... In our case, we refer to his heart "stuff" as owees we can't see rather than a "sickness," in an effort to cut down on confusion when the kids are sick. We just explained that the doctors had to move the skin to get to the owee to make it better, and that it takes a while to get better, but that he will be home when he's ready to play and eat and sleep at home. We let them decide whether they wanted to see him, and both did. We told them what to expect and showed pictures of other kids post op to let them know what they might see. Even so, we initially let them see him covered up to the neck. They were relieved to see him, and mostly let it go until he was alert enough to look at them. You might be surprised how resilient kids are, and how quickly they come to understand the process as a part of your family's life. My best advice : give her some basic information and answer her questions as they come. She may surprise you with what she does and does not want to know. Finally, we let our older boys pick out stuffed animals for Sam. We brought them to Sam in the hospital, and took pictures of them with him. They saw that he was with them, and had an idea of how he looked and that they were represented in his room until they were allowed in themselves.

Good luck to you. We'll be sending good thoughts:)

[Cyndlouwho]

There is a website that has some information about a lot of types of congenital heart defects that two of my daughters really seemed to like to look at (one was about 3 1/2 when I showed her). I think it helped them to understand a little better why Dylan needed his surgery. They will occasionally ask me to let them look at the website again too. It allows you to compare it with a healthy heart and will even show what is typically done with the surgeries to repair it. Of course, I've found it helpful to show to adults too. You can go there by copying and pasting the link here: http://www.pted.org/?id=list

Good luck on the 3rd.

[Kristin A]

Thanks for all the suggestions! We have been pretty honest on a basic level - we've told her that her brother has holes in his heart and needs band-aids on them. She opens her mouth and shows us the "hole" to her heart! Kids are so funny. We'll definitely wait a few days before taking her to see Max - and take a teddy bear full of love :)

[Cyndlouwho]

I just wanted to wish you well for the surgery tomorrow. I'll be thinking of you!

[Kristin A]

Just a quick update - Max's surgery was Thursday. Done by Dr. Kaza at PCMC. All went well. Max is doing great in the PICU. He's off the ventilator and eating from a bottle already. Thanks for all your support!