"Oh, no! My Child Has to Have Surgery!"

I've been thinking a lot about surgery lately. So much that I actually thought I'd written about this already....

Years ago I was waiting while Amanda had leg surgery. We were sitting in the Day Surgery Lounge of Children's Healthcare. Near us was another family, the mother sobbing hysterically in her husband's arms. I wondered what their child could possibly be going through to have her is such a state. After about an hour she collected herself and sat quietly waiting.

When the nurse brought them back to see their child I overheard her husband say, "There, I told you a tonsillectomy was nothing to be scared of." It was all I could do not to laugh! All that drama for tonsils? Seriously?

Then I remembered Amanda's first surgery. The first surgery is terrifying for parents, whether it is open heart surgery or a tonsillectomy.

In February of 2006 when Amanda was 6 years old she had strabismus surgery.  I was scared and frustrated. We'd had her wear a patch for ages in order to avoid surgery and now we still had to go through with it.

However, it was obvious to us that she had little or no depth perception. When doing a board puzzle she would put the correct piece near the space and the randomly slide it around until it clicked into place. We had her using sippy cups because she would try to put her cup on the table and miss it by an inch, the cup crashing to the floor. We could see it when she was walking with us. If she got to a change in surface, even a different color tile, she would pause and test it with one foot to see if she could contiue or needed to step up or down. We hated the idea of surgery, but we could see how it would improve her life if it worked.

See how her left eye is drifting?

In retrospect it was a relatively minor procedure, but at the time it was very scary. I remember waking up at 5AM to get her ready. I was worried that she would be hungry, but she was so sleepy that it wasn't an issue. I bundled her up in her favorite fuzzy blanket, put her in the car in her pajamas and drove the hour to the surgical suite.

Now I know that surgery that doesn't require hospital services is generally considered safe surgery. If the doctors can perform the operation in an outpatient surgical suite they have all of the necessary safety equipment and an anesthesiologist present, but don't expect any complications or an overnight stay.  But I didn't know that then.

We checked in to the office at 6 AM. After waiting a few minutes we were brought back to a pre-op area. We waited in our own space with 3 walls and a curtain for privacy. There was a gurney for Amanda to lie on and a chairs for us. They let Amanda stay in her own pajamas. They gave her a little "loopy juice" (versed) to make her sleepy and help her forget the procedure, then they covered her with a warm blanket and wheeled her through the curtain.

I stayed with her as long as they would let me, holding her hand all the way to the doors of the surgical suite. When the doors closed behind her I realized that tears were streaming down my face. Amanda had only been away from me while she was at school. I felt so helpless with her out of my sight, out of my control.

My husband was surprised that I was crying. He knew logically that it was a short, safe procedure. All I knew was that my baby was being hurt. In that moment it didn't matter that it was the right thing to do.

It really was a quick surgery. It think the actual procedure lasted about 30 minutes. After that she was in recovery for another half hour or so. We left the surgeon's office by 10AM.

At first Amanda's eyes were blood red. It was kind of creepy, but the blood cleared in a few days. Best of all her eyes really weren't drifting anymore. We could see her really looking at things - both eyes focused together. It was surprisingly cool. It made me wonder what the world had looked like to her before the surgery.

Amanda still wears glasses. She has progressive myopia that had nothing to do with the amblyopia and strabismus. Happily, her depth perception is much better thanks to that surgery.

No parent wants to put their child though a surgery. However we've learned that if there is need for surgery, there is no point in waiting. I don't think doctors lightly suggest surgery. I'm fairly confident based on our experiences that they will always try other, non-invasive methods first. Before eye surgery Amanda's doctors tried glasses and patching. Before back surgery her doctors had her go to physical therapy and wear a brace. Only in an emergency will most doctors suggest immediate surgery. When Amanda broke her hip and the doctors said it needed to be surgically pinned as soon as possible we didn't hesitate. She had surgery within hours of arriving at the Emergency Room.

If you are facing non-emergency surgery for your child,  you have the opporunity to alleviate some of your fears beforehand. Sit down with your child’s doctors and ask the questions you need answered to make an informed decision. Ask about the risks of surgery, the surgery itself, how the doctor thinks the surgery will help and what to expect to after the surgery. Ask for an email address to contact them if you have additional questions. I often find myself with questions after I've left the office. If you are still unsure, get a second opinion from another medical professional. It can only help in your decision-making process.

However, if your child needs surgery don't be surprised if the doctors tell you the worst case scenario. For liability reasons they have to warn you about the risk of blood transfusions, comas, even death. THAT DOESN'T MEAN THAT WILL HAPPEN! It just means that there is a risk to any procedure. It may mean that one or more of those things has happened to a patient somewhere, at some time during this specific procedure. In this age of litigation doctors have to warn you of any and all possible risks or they may be sued for malpractice.

And, speaking from experience, if something does go wrong you are in the best place to handle an emergency. Amanda has had a blood transfusion (so have I) without any complications even though it was unplanned. Following hip surgery her lung collapsed. She was treated immediately and although it resulted in an extended hospital stay she has had no long term complications.

I've found that other parents are often the best resources. They will tell you truthfully about their experiences, good and bad.We are lucky to have a resource in the U.S. called Parent to Parent. They have a nationwide network. They will try to connect you with another parent whose child has undergone the same procedure.  We were very lucky to have a family in Atlanta to talk to before Amanda had her spinal fusion. In fact, the mom was so kind that she showed up at the hospital with magazines and snacks.  She even moved a more comfortable chair into the room for me. Talk about supportive!

Now we have been through nine surgeries with several more on the horizon. I say "we" because although Amanda has the surgery it impacts our entire family. My advice is simple. Do it if it is medically necessary to improve your child's health or quality of life. Don't do it casually. Research the proposed procedure online. Talk to the surgeon and other parents. Find out what the recovery will be like and what the potential downsides may be. If you are concerned about blood transfusions donate blood in advance of your child's surgery to be used in an emergency. Do your best to prepare yourself and your child,  then be confident in your decision knowing that you have taken a careful approach. But expect to be scared - after all, you're a parent. Its part of your job to worry about your child.

Amanda's First Surgery - Bilateral Heel Cord Lengthening

Bilateral heel cord lengthening was the first surgery Amanda had. Its sometimes called heel cord release or tenotomy. We live 1,000 miles from any family members so there was no one to help us through this emotionally difficult experience.  I was scared and felt very alone. I wasn't sure what to expect during the surgery or the recovery period afterward. The surgeons, who do this operation dozens of times each year, gave us only limited information about the process and recovery.

I tried to have a positive outlook on things that left me trembling. This is an excerpt from a  letter I wrote to our families in 2005 explaining the situation,

"Amanda is facing a tough summer.  In mid-April we brought her in for a routine check up and discovered that she has quite severe scoliosis (57 degree curvature). We decided to put her into a full body brace for the next several years. She doesn’t like the brace and we’re all having a hard time adjusting to the new routine... 

...During the same appointment we discovered that she needs to have both of her heel cords released surgically.  They are contributing to the deformity in her feet and reducing her ability to walk independently... 

Amanda’s leg surgery is scheduled for July 1.  It is a relatively uncomplicated procedure that should be completed in 1-2 hours.  It does require general anesthesia and due to some of her other issues she will need to be on oxygen afterward.  For the next 4-6 weeks she will have both legs in solid casts, unable to walk.  She will also be wearing her new glasses, her back brace and her eye patch.  Not a normal summer by any stretch of the imagination!"

2005 purple casts

Although this is a common procedure for children with special needs we had never considered surgery. Amanda had been in orthotics since she was a year old. She never owned a pair of sandals or dress shoes because they simply didn't fit over the big clunky braces. We had thought the braces would prevent her feet and legs from developing any serious problems. However, despite years in braces her Achilles tendons had tightened to the point where they were impacting her ability to balance and needed to be corrected.

The bilateral heel cord lengthening was a fairly quick procedure. In our case it wasn't combined with any other surgeries. We went into the hospital in the morning and were home by late afternoon. It took just over an hour for the surgeon to make the small incisions and cast her legs. 

She was in the recovery room in less than 2 hours. All we had to do was wait for her to wake up enough to have a few sips of clear liquid and we were on our way home. I was sort of panicked about taking her home - what if something went wrong?

To our surprise, Amanda was given "walking boots". She was up and walking the next day. We found that water shoes (the type you wear at the beach) worked better than the boots supplied by the hospital. She used a walker for support, but she wasn't a very good walker before the surgery, so that was no surprise.

Amanda is nonverbal and seems to have a high tolerance for pain so I can't comment on how painful the surgery was. We kept her on the prescribed muscle relaxer and pain medication for the first few days and then tapered her off. I do know that after a few days she gave no signs of being uncomfortable.

The casts were heavy and awkward so she couldn't walk far in them. We already owned an adult stroller and used it to get her around. I know of parents who have had to rent wheelchairs for their children while they were in casts.

When the casts came off six weeks later, she had a tiny horizontal scar on the back of each calf. It was strange to see such a small incision when she'd had casts covering her entire lower leg, from just below her knee to her toes.

2009 blue casts

At the time I was terrified. I think any time your child is going to have surgery it's frightening. Amanda has had multiple surgeries and I know now that she will come through them fine. Still, every time they wheel her away from me on a gurney I get tears in my eyes. I hate thinking about my baby, unconscious and being operated on.

Four years later Amanda had a repeat heel cord lengthening, again despite wearing ankle-foot-orthotics (AFOs) for the years between the surgeries. Amanda's feet had become deformed over the years, from walking on her navicular bones. She was supposed to have a surgery called calcaneus extension. However, the surgeons determined that her bone quality wasn't good enough for that. They estimated that the donor bone would be approximately 10X stonger than her own bone. Instead they did  a second bilateral heel cord lengthening and casting. The second time they cut through more levels of the tendon with the hope of improving her gait.

First day of school 2009 -
 if you look you can just see the cast on her left leg.

The second time around was easier than the first. Even with the modified surgery it was day surgery. We knew what to expect this time and there were no surprises. Amanda came home in casts. We were all happy to sleep in our own beds that night, knowing that in  a few days Amanda would be feeling better and walking again. In fact, later that summer we took her on a family vacation to New England. She started back to school on time that fall, despite the double casts.

If your child or family member is facing this surgery I want to put your fears to rest. Aa Amanda has had this surgery twice I can honestly say that it was not a big deal.