Dear parent of children injured by trauma accidents, hard decisions, and amputation,
My son, Noble, was in the yard with our whole family on Monday, June 1, 2009. I had insisted that he come outside to enjoy the night with me, my husband, and my 2-year-old daughter, Janelle. Janelle and I were playing on the playground and weeding while my husband was mowing the lawn on our riding lawn mower. Noble was 5 years old and had been in the lawn while family members mowed the lawn many times. He liked to run behind it, but I always thought it was a bad idea for him to be anywhere near it.
That night, I had just warned him to back off and he almost ran right into the side. He dove away from it at the last second and he tripped/slid because he was wearing rubber sandals. I first thought that it was a near miss, but after an instant I realized that he was hurt very badly. I ran to him and I couldn't believe my eyes. It looked as though Noble had stepped on a grenade. His heel was blown off and his calf was ripped off the bone. I ripped off my shirt and wrapped it around his wounded leg. I laid him down on his back and raised his leg above my shoulder. My husband ran to call 911 and was in a panic. I kept Noble conscious and talked to him the whole time. We prayed to God, we sang, and we called out to my husband. It was like a scene from a war movie.
To fast forward some time, an ambulance came within 5 minutes or so and then within 30 minutes we were airlifted to a local hospital in Virginia. Noble never lost consciousness. He sang and talked to me. He answered questions and I shielded him from seeing his leg every time they looked at it. He was still in excruciating pain when his leg was moved and he would cry out. I asked everyone that looked like they were in charge if they thought we could save his leg. At the hospital, the trauma team worked to put his leg together as best as they could. At the time, my biggest worry was his calf, because I had no idea how bad the heel wound was. His initial surgery that night took a little over 2 hours while they approximated his calf muscle, tissue, and skin.
The doctor that night informed me that his heel was almost completely gone and his Achilles tendon was no longer attached to anything. We were told that his wound was very dirty from being in the lawn and that he had a high risk of infection. I also learned that they couldn't fix the Achilles tendon because there was nothing to attach it to. They used a wound vacuum to help keep the tissue together and to prevent infection. We would find out more in the next few days.
By Wednesday, after his first debridement, we realized that we needed a children's orthopaedic and plastic surgeon. I began to tell any doctor or nurse that came in our room that we were interested in going to Children's Hospital in D.C. I was scared to move to another hospital, but convinced that Children's could fix Noble's leg. We arrived at Children's at 3:30 am on Friday, June 5 by ambulance transport. By 6 am, there was a team of doctors in Noble's room informing me of the plan to check out Noble's wound that morning. I call them the "Calvary." It felt like these people had their act together and that we would soon move in a forward direction. I met with the orthopaedic doctor, right before his procedure at 7 am. He informed me that Noble's injury was going to have one of two outcomes: reconstruction or amputation.
Of course, I did everything that I could do to make sure that we would try to save Noble's leg at all costs. The thought of amputation made me sick to my stomach. I thought of all of the technology out there, and I figured that they could make Noble's leg and foot work right. They went in for a quick look and came out to inform me that he needed a major debridement in the operating room. The situation was worse than they had anticipated which scared me out of my mind. I had let my husband go home for the night and planned for him to come later in the afternoon. I had no idea that these people meant business and would begin his treatment so quickly. I was filled with anxiety. After the major clean out of Noble's wound, the nurse practitioners and doctors informed me that they had to remove a good bit of Noble's tissue from his calf. A very large portion of his Achilles tendon was gone and tissue from the bottom of his foot up to the base of his calf muscle also was missing. I still had the picture of his wound in my mind from the first night and I held onto that initial hope.
In those first days at Children's, our plastic surgeon was hopeful. He was interested in trying a procedure called "flapping." He planned to take a large area of tissue and muscle from his quadriceps or latissimus and cover the large area that was missing. The orthopaedic doctor was not quite as optimistic regarding reconstruction. His concerns were of the potential lack of mobility at the joint and he felt that amputation would probably be a better option. The infectious disease team and the pain team blew my mind with how on top of our case they were. Infectious disease tracked growth from cultures from multiple clean-outs and Noble was put on major antibiotics. The pain team was very committed to keeping Noble comfortable and he was on two IV drugs and an epidural to keep him comfortable.
After one more debridement, we were informed that our first plastic surgeon was leaving the hospital and the new plastic surgeon was not interested in performing a flap procedure. He personally confirmed this opinion on Friday, exactly one week from arriving at Children's. It was very hard to have hoped so strongly for reconstruction for a week and a half after the injury, only to have those hopes dashed. Luckily, we had a little warning of this older, and more experienced plastic surgeon's opinion, so I had begun to research amputation and prosthetics. It didn't seem real. That day was very difficult for all of us. The orthopaedic surgeon also showed my husband pictures of Noble's wound after being debrided that day. This helped us begin to understand the extent of the injury and that amputation might be the best option.
It is hard to say how we found peace in the decision to amputate Noble's leg. As he lay in the bed, it was easy to believe that Noble's wound wasn't that bad because it was covered by a dressing that looked like a cast. The nurses and doctors would all ask Noble to wiggle his toes, and he could. Noble's foot was viable, with the exception of a heel bone, skin around the heel, and an Achilles tendon. It was pink and had astounding vascularity. Missing skin further up the calf was another issue, but it could have been covered. It felt heart-wrenching that his foot seemed so viable, with such a gaping wound at the same time. In our continuous research on orthopaedics, we learned that people can walk without toes, but can't walk normally without a heel.
In the end, we made our decision in favor of Noble's long-term mobility. We wanted our son to run, jump, and play. We were scared to put Noble through numerous rebuilding surgeries, only to fail or not work well enough. The team at Children's warned that if we were to reconstruct, his ankle would most likely have to be fused, making it no better than a prosthesis and still very susceptible to further injury. The risk of infection in the future, lack of mobility, and a recovery period lasting years rather than months were too daunting. We knew that delaying the decision any longer would only make it harder. We knew that Noble (and we) would become more attached to his imperfect foot and leg.
By the time we made a decision that was final, it was Wednesday June 17. The earliest that Children's could schedule his amputation was June 24. He would need another clean out and wound vacuum change to get us to the amputation date, which was 24 long days after the accident. It was an excruciating and exhausting journey.
1. Is it the right thing? We will never know, but we couldn't wait to do anything. We were blessed to be infection-free so far, but we were at a high risk. Also, we did seek a second opinion by e-mail. We sent records and pictures to him and he supported our decision. (As a side note, I do think that if I had combed the U.S., I could have found a doctor to do the reconstruction surgery, but it held more risks than we were willing to try. His wound had been open for 2 ½ weeks already by decision time.)
2. How do you tell a 5-year-old that he is getting his foot removed? We had an especially difficult time with this because Noble's foot had been wrapped so that he could see the balls of his foot and his toes. He could wiggle them and see them the entire time. His dressing began from the middle of his foot to under his knee. We were sure that Noble's biggest problem would be parting with his toes that looked perfectly normal to him. We were right. When we made the decision on June 17, I began to foreshadow the coming events for Noble. I told him that his "boo boo" wasn't getting any better and that his foot would never get any better. I told him that he was at a high risk of infection (he didn't know what that meant, but it sounded bad to him) and that the doctors were doing everything they could, but it didn't look good. He was not happy about any of this information. The day before his amputation, we took Noble to a separate room to inform him of his surgery. The nurse practitioner, who had worked with us the entire time and had "led the Calvary" told Noble the news. I couldn't bear to be one to break it to him. At this point, I was tired of being the bad guy and I didn't want Noble to associate me with bad news. My husband was there as well as the Child Life specialist, Danielle. She had worked with us on what to say and she was there for moral support. I wouldn't say that Noble coped with the amputation in one day. He knew it was going to happen and told every doctor or nurse that came into his room to not take his foot. As he was rolled down to the operating room the next morning, he was screaming at them to not take his foot. It was heart-wrenching and I wouldn't wish it on my worst enemy.
3. Aren't all these drugs bad for a young kid? Yes. Of course strong drugs aren't typically prescribed for young kids. Noble was in huge pain, so he needed huge pain control. During his stay at Children's, Noble got two epidurals, which didn't work for him. Noble was so active, even in pain, that they pulled out millimeter by millimeter and made them useless. He was on Dilaudid and Ketamine for pain, Valium to calm him, as well as a neuropathic drug for phantom pain.
4. Amputation is scary. I found power in knowledge. I joined an amputee forum and posted many a question over the span of two weeks. Even after the amputation, they have provided me with a lot of answers and support. I also contacted a local (qualified) prosthetist that provided me with answers to all of my questions. The answers were not all what I wanted to hear and some of them made me anxious at first. Amputation as a child often requires re-amputation every few years because of bone growth. Most doctors try to avoid amputation on children because of the residual challenges. The closer to skeletal maturity, the better the prognosis. At 5, Noble is a far cry from skeletal maturity.
The best parts:
1. Again, Noble is 5. It is a good thing that he is old enough to talk and to speak his mind. He also is young enough that he bounces back so fast. He couldn't comprehend all the details of his situation, which also had some positive aspects. He stopped asking about home after about a week after his accident and settled into hospital life. He also never asked "why me" or felt too sorry for himself. He accepted his injury and disabilities relatively quickly. He isn't highly motivated and hates change, however. So, physical therapy was not his favorite part of the day, but Noble never dwelled. Once PT or a procedure was over, he moved on.
2. Once our decision was made, our family was going in a direction. Direction felt good, after grappling with such indecision for weeks, and it provided a good deal of peace.
3. About 4 days after amputation, Noble began to bounce back a bit. By one week out, Noble was being weaned from his major narcotics. He was eating again and beginning to use his walker. Noble's attitude was playful and he was getting on a schedule.
4. We invited a 15-year-old congenital prosthetic wearer to show Noble a live version of what he would wear. He plays sports and gets along very well with a below-the-knee prosthetic. We also invited the owner of the prosthetics company to visit to help him envision his "new foot." He even let us borrow an example so that we could show our family and friends. It helped Noble to show others. He didn't really like to talk about it at first, but then perked up when we told other people about it.
5. The teams of doctors began to think that we could go home that Friday (nine days after surgery.) Noble went home for the July 4 weekend and I was very nervous to leave the safety of the hospital. I was responsible for dressing changes and all of Noble's care. Once we got home, though, I found that our family really pitched in. Noble wasn't interested in doing a lot of activity, which bummed me out at first. I realized, though, that Noble was coping with not having a foot and lower leg. He is not like everyone else.
6. We got hooked up with the Shriner's Hospital. The Shriner's provide free care (inpatient and outpatient) to children under 18 with orthopedic issues. It includes spinal cord injuries, congenital deformities, prosthetics, etc. We were able to get in touch with our local Shriner's group who, with the help of our doctors at Children's, got us into the Philadelphia Shriner's Hospital for inpatient rehab therapy. Many children do not need therapy after an amputation, but Noble had been practically immobile for almost 5 weeks by the time we went home.
In short, our experience was horrific, but there is a light at the end of the tunnel. The treatment that we got from Children's was superb. He was well cared for and is now on the other side. We had hoped that Noble would walk to Kindergarten this fall, but it does not look like he will be fitted for his prosthetic leg by then. There have been surprises after the amputation, including slow and scary wound healing from surgery. Our family has dealt with some disappointment and surprise. Noble's slow healing is heart breaking, but his mobility and attitude is amazing. He can do just about anything he wants and it is moving to see him doing the same things he used to do before his accident. Once his prosthesis comes in, I'm fairly sure we'll be hard-pressed to consider him "disabled." We have wonderful friends and family that have helped us at home and while we were in the hospital for almost 5 weeks.
I don't know why this happened to Noble, and I am sure that it wouldn't make sense if I did know. Our faith in God and His plan definitely gives us the strength every day to move forward. We feel blessed that Noble lived through the accident, procedures, surgery, and wound healing. We can see him every day and tell him how much we love him. Noble's life holds nearly limitless opportunities and we hope his recovery inspires other families who undergo traumas like ours.
Noble's Parents, Holly and Noble