When Your Preschooler Needs Heart Surgery, by Kellie

Excerpt from Cardiac Kids Parents’ Resource Guide and Journal (Abridged version for the website)

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My son, Evan, had just turned four when we found out he had a heart defect that needed to be surgically corrected. He had Coarctation of the Aorta - which in simple terms means an extreme narrowing of his aorta and a consequent situation of high blood pressure on the upper part of his body and virtually no blood pressure on the lower half.

To say we were shocked and scared is an understatement; we went into overdrive trying to find out about his condition and discovering the best avenues for treatment. One thing we learned right away, the first day of his diagnosis, in fact, is that there isn’t always just one way to fix a problem. In the end, it took three trips to surgery to fix Evan’s coarctation - two balloon catheterizations (caths) and one surgical fix of the problem.

Preparing Yourself and Your Child for Surgery

First of all, I was lucky enough to have a friend who shared some books and reading material with me about heart defects. There are also several great books that are written just for children about surgery, the Cath Lab, and the heart in general. We read these to Evan and talked in simple terms about what would happen to him. He seemed interested some days, not at all on others. But ultimately, he wasn’t shocked when we had to finally go to the hospital for the surgeries.

Another invaluable resource is the hospital tour they offer to surgical patients and their parents before the big day. They made this very kid-friendly and informative. Absolutely take advantage of that service if at all possible.

If your child has to give blood before his surgery, one thing I found helpful is to ask for some numbing cream to be applied beforehand. You’ve got to plan ahead a bit for this because it takes about half an hour to take effect; but I did this for Evan, and the blood draw, although scary, was not nearly as painful as it might have been.

What Happens Before Surgery

On the day of the surgery, we were lucky enough to have an early surgery time (they schedule children from youngest to oldest), and when we arrived in the waiting room, we found it filled with excellent toys and books. Also, we always brought a special stuffed animal from home that they allow the child to hold onto and take into surgery.

Parents go with their child to have vitals taken - the hardest part about this is convincing your preschooler that it’s OK to wear those weird hospital jammies and socks. My child cried every time he had to put these on. Back in the waiting room, a nurse brings a sedative for your child before he or she leaves for surgery. Believe them when they tell you that this sedative will make your child a little tired and loopy. Hang onto your child at all times after he or she has had it. At the appointed surgery time, if your child is going to the cath-lab, you may carry him or her down to the lab and stay while the anesthesiologist puts your child to sleep. If your child is having cardiac surgery, parents are not allowed to go with their child to the operating room because of sterilization issues. This was one of the hardest parts of the entire process for us - even with the sedative, Evan was very scared and sad and crying when he was being wheeled off by the nurses to surgery. Thankfully, he doesn’t seem to remember this now.

One piece of information that I find very reassuring is that in general, they do not start any IV’s until your child is asleep in surgery – so your child is not aware of this potentially traumatic experience. I did find that after Evan came out of surgery, he was very bugged and bothered by the IV; he even claimed it hurt him at times. He tried to pull it out a few times, but they tape it on VERY well so he was not successful. After awhile, he got used to it and was able to ignore it for the most part.

After your child heads to surgery, you are led to the surgical waiting room with other waiting parents. The great thing here is that they give you a pager so you can leave the area and still be reached. Also, while your child is in surgery, a nurse will call from the operating room once an hour to keep you updated on your child's progress. This was a great comfort to us while we waited. When your child's surgery is over, the doctor will come out and speak to you about the procedure.

What to Expect After Surgery

If your child goes to the CICU (Cardiac Intensive Care Unit), you will be brought back to your child when he or she has been settled in. The sight of my child post-surgically was a little scary. He had a breathing tube down his throat, MANY wires and tubes connected to his body to monitor his vital signs, a chest tube sticking out of the side of his body, IV’s, and a catheter (and probably more tubes that I can't even remember now). Evan was quite combative after surgery and had pulled out some of his tubes, which were being reconnected as we entered. He seemed delirious and scared. They had him on plenty of pain medication, though, and he did not appear to be in pain at all.

Coping with Pain After Surgery

One thing about The Children’s Hospital is that they try VERY hard to be aware of children's pain at all times. They actively treat pain and want you to let them know if your child is experiencing anything that can be helped by pain medication. During this phase of recovery, be aware of the fact that a chest drainage tube can be very painful for kids. It is essentially equivalent to having a small garden hose sticking out of your side. Any kind of movement hurts, so the nurses try to keep your child as still as possible. Also, the breathing tube was very scary for my son once he had gained consciousness to a point of being aware of it. It made him gag quite a bit; we had to help him calm down and told him he would be able to get it out as soon as possible. Also, because he was combative when he first woke up from surgery, they had to tie his hands down to the bed. As you might expect, my 4 year old had a HUGE problem with this. After a while they untied his arms as long as he promised not to try to pull anything out.

The hospital even sent in a Child Life Representative who brought stickers and markers and small toys for him to play with. Unfortunately, with all of the IV’s and wires attached to his arms, Evan couldn’t really do much during his time in the CICU and mostly just got frustrated when we‘d even try. We were able to play videos for him, though, which helped somewhat. The CICU also has a dedicated parents’ rest and recovery room, which is nice if you have relatives or friends visiting or just need a break from the room to have dinner and regroup.

Entertaining Your Child

Thankfully, there are TV’s with VCR’s in all of the rooms, and we brought Evan’s favorite movies with us to the hospital for him to watch. They do have a video library to check out other movies, but my experience with toddlers and young children is that they want their own favorite movie, toy, stuffed animal, etc.

When we were able, we took Evan to the playroom, which was fabulous. You can also go there and bring some toys back to your room if you’d like. Another thing we did when we were allowed was to take Evan on rides around the hospital in the red wagons they provide. You might have to go and get one from the hospital lobby, but you can cushion it with pillows, take the IV, and go explore. This trip-taking was incredibly valuable for all of our sanity.

As for his general fear, we decided that it was too scary an experience to leave him alone at any point, so one of us stayed with him – day and night - for the time we were there. I can imagine for a longer stay that this would be hard – if not impossible, but for us, it was the only way we knew he’d feel safe. One thing that really lifted his spirits was seeing his older brother (who was 8). We had to be careful to wait long enough so that the visit wouldn’t scare our other child; but when he finally came to see Evan, it did them both a world of good.

Going Home!

We are now almost a year out from Evan’s surgery, and he is a happy, healthy, and wildly active kindergartener. If you didn‘t know, you‘d have no idea he‘d ever had a problem. We will continue to follow up with the Cardiology Department once a year for the rest of his life. During these visits he usually has an echocardiogram, an EKG, and a visit with his cardiologist. We have not had to deal with Evan’s second problem as of yet – he also has a bicuspid aortic valve – but because we are being followed, I feel confident we will be able to keep up with any developments that might occur. I feel incredibly grateful that Evan’s defect was found before it caused major problems or even death, but there are still times I feel sad that he even had to deal with it at all. And even though he is better, his aorta will never be "normal" and that reality does occasionally nag at the back of my mind. But all in all, we realize how very lucky we are and feel thankful for him every day.