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We call our son Anthony, our “ray of sunshine” because he is always happy. Anthony has spastic quadriplegic cerebral palsy and a profound developmental disability. He is wheelchair dependent, does not speak, and is fed through a gastrostomy-jejunostomy (GJ) feeding tube. In spite of his significant disability, he is a happy, healthy kid who is famous for his smile.

Early one morning as I was getting Anthony ready for school, I could tell he wasn’t his usual happy self. He was lethargic and his muscle tone was low, which is unusual for him because he has spastic cerebral palsy. I figured he was coming down with something and decided to keep him home from school. As part of his routine morning care, I went to flush his feeding tube. When I opened the GJ port, blood started draining back out of the tube and, based on the amount of blood that was coming out, it was obvious whatever was going on was serious. I decided the safest thing to do was call 9-1-1.

The ambulance showed up within minutes, and when the EMTs walked into our house, one of them fainted when he saw all the blood that had come out of Anthony’s feeding tube. This required a second ambulance to be called! One ambulance took off with the EMT; the other ambulance took Anthony to the emergency department. We got to the hospital around 7:30am.

In the emergency department, they took Anthony’s vital signs and started an IV. At this point, Anthony’s heart rate was 130. His baseline heart rate runs high, but this was higher than usual. All his lab work came back normal and his vital signs were stable, except for his elevated heart rate. The emergency department attending called Anthony’s gastroenterologist who advised us to increase one of Anthony’s medications and follow-up with him in the office later in the week. When the attending told us what the gastroenterologist suggested, I was not at all comfortable with the plan. There was no way I was going to take Anthony home with blood coming out of his GJ-tube. He was sick and I knew something was wrong.

The attending asked me how much blood were we talking about. I told her, “As much as you want. Just open the tube and it drains blood.” I unplugged the GJ-tube port and blood came pouring out. Obviously surprised, the doctor said, “OK, that’s enough, I get the point.” She asked me, “Did the resident see this?” I told her, “No,” but that I had explained to him what was going on. “Well, seeing is believing,” she said. Even though I told the nurse and the resident that a significant amount of blood was coming out of Anthony’s GJ-tube, neither one of them checked the tube to assess what was going on. After seeing the blood, the attending ordered abdominal x-rays and a surgical consultation. The x-ray was unremarkable, but Anthony was obviously getting worse as the day went on. His heart rate was now in the 150’s. His other vital signs remained stable.

The on-call surgeon came to see Anthony. He was an older gentleman who seemed inconvenienced to be there. His examination of Anthony consisted of pressing on his stomach a few times, after which he told the attending, “This is not a surgical matter.” He then walked out of the room without acknowledging or addressing my husband or me.

The attending wanted to admit Anthony for observation, however, I felt Anthony needed more than observation. I am a nurse and, based on my experience, I thought he might have a bowel obstruction, perforated bowel, or necrotic bowel. All serious issues. None of the doctors felt Anthony had any of these things, but I was not convinced. He was getting sicker and sicker by the hour. He was in obvious pain and he was still bleeding from his feeding tube. His heart rate was climbing and was now over 160.

Although Anthony cannot talk, his facial expressions and heart rate told me he was in pain. I told the emergency department staff repeatedly that something was seriously wrong, but no one felt the same sense of urgency that I did. They didn’t know our happy boy – they only saw a child who was severely disabled.

Before admitting him, a doctor from the medical floor came down to the emergency department to see Anthony. By this time, Anthony’s heart rate was over 180. I quickly explained what was going on with Anthony and this doctor actually listened to me. I heard him tell both the attending and resident that Anthony was too unstable to go to the regular floor. Finally, they began to understand that something serious was going on and ordered an abdominal CT scan. From the look on the resident’s face when he came to give us the results, we knew it didn’t look good. The surgeon was called back in. After seeing the CT scan, he brought us to a small conference room and sat us down to go over our options. Nothing could have prepared us for what he had to say.

Based on Anthony symptoms and the CT scan, it appeared Anthony had perfuse damage throughout his intestinal tract. The surgeon said there was not a single area that he could “fix.” Usually in cases of obstruction, perforation, or necrosis, the damaged part of the bowel can be removed. However, in Anthony’s case, the CT scan showed swelling and white spots throughout his entire intestine, which appeared to be massive tissue damage. There was also fluid, presumably blood, in his peritoneal cavity. The surgeon told us he could do an exploratory surgery but it was unlikely he would be able to repair this type of damage. The surgeon gave us two options: do the surgery or “let nature take its course.” The surgeon asked, “Do you really want to put a kid like Anthony through this major surgery?” He explained that Anthony was very sick and likely would not tolerate the surgery well. He didn’t believe the outcome would be good. After the surgery, Anthony would have a long and complicated post-operative course. He would likely have an infection, which could easily lead to a downward spiral. Did we really want to put him through this? 

We got the distinct feeling we were being discouraged from doing the surgery. It was obvious that the surgeon did not want to operate on Anthony. We felt that he did not view Anthony as having a good quality of life because of his severe disabilities. The surgeon didn’t know that Anthony was the happiest kid in the world when he was feeling well. He didn’t appreciate that Anthony is an important part of a loving family, that he has a great quality of life, and he has many friends at school and in his community. We felt the surgeon was giving us the worst case scenario only. Regardless, the prognosis we were given was very grim and we were heartbroken.

Despite the surgeon’s efforts to discourage us from the surgery, my husband and I both agreed to an exploratory surgery. It was an easy decision for us. We needed to know exactly what we were dealing with and the only sure way of knowing was to open him up. We were also asked about a do-not-resuscitate order. We made it clear we wanted everything done for Anthony until we had reason to think otherwise. 

Anthony was finally taken to the operating room at 9:45pm that night. My husband and I sat in the surgical waiting area, both feeling numb. Everything happened so quickly. I was having a typical morning getting the kids up and off to school. Just hours later, one of our boys was on death’s door. It just seemed unreal. What would we do without Anthony? How would we tell his brothers? While I wanted to know what was wrong with Anthony, I dreaded meeting with the surgeon after the surgery. I was afraid to hear bad news.

The surgery took about three hours. When the surgeon came out to find us, we were the only people left in the waiting room. As he walked across the room, he said, “He’s OK” before he even got to us. The surgeon explained that most of the “necrosis” he had seen on the CT scan was actually air in Anthony’s bowel. He had developed a rare complication from the GJ-tube. His small intestine wrapped around the tube and caused a kink in his bowel, this cut off the blood supply to the intestine around the GJ-tube. That segment of his bowel was necrotic – dead from lack of blood flow. The surgeon removed about one-fourth of Anthony’s small intestine and sutured the ends of the healthy intestine back together. 

With a situation like Anthony’s, the longer it takes for a patient to get to surgery, the more the intestine dies. Had we waited much longer – or done nothing at all, Anthony surely would have died in a very short time. The surgeon’s efforts to discourage us from going through with the surgery conveyed the message that Anthony’s life was not worth saving because of his severe disability. Individuals with disabilities are commonly viewed as a burden to their families and to society. Too often, little value is placed on their lives. I’m confident that if Anthony had been a typical child, he would have been taken to the operating room right away. Instead, he waited over twelve hours before receiving the proper treatment. This delay made his condition worse and his surgery more complicated, and it nearly cost him his life. When we went to see Anthony in the post-op area after surgery, the nurse caring for him looked at us and said, “Good job advocating for your son.”  

Source: Shared Struggles: Stories from Parents and Pediatricians Caring for Children with Serious Illnesses