UCLA Medical Center
On August 11, 1998 our two-year old son, Alexander, entered UCLA with a brain tumor and a single noticeable symptom - he had ataxia, an imbalance when we walked. (This is how we suspected something was wrong.) On August 20, 1998 Alexander would leave UCLA with 2nd degree burns, the inability to laugh, cry, walk, his eyesight significantly injured, a hematoma in his brain, and part of the tumor still remaining.
Below are some of the details of Alexander's treatment at UCLA. This information comes from his medical chart and the diary that his mommy, Raphaele kept.
Second Degree Burns
I wanted to see Alexander as soon as he was in Pediatric Intensive care Unit or PICU. When Mike and I were finally allowed inside we were shocked. UCLA's PICU was a big room with curtains between the beds. There was our beautiful son laying under bright lights with tubes everywhere, from his brain, arms, feet and groin, machines beeping, nurses around him. A doctor, part of the surgical team, was using a small penlight to look into his eyes. His eyes. His beautiful, big brown eyes were stuck in opposite directions. His right eye pointed up and to the right. His left eye rolled down and stared down to the left. He didn't know where he was. He was calling, "mommy, mommy, mommy." I calmed him down, as I always did, by talking French to him. "Je suis la, mon amour. Mommy is here my love, right here mommy is not going away. Mommy is here." I was holding his face, his hands, giving him kisses so he would go back to sleep. After a while he calmed down. I looked at him with all the tubes - one was siphoning fluid from his brain and I collapsed on the ground. Several nurses ran to me, because Mike was talking to one of the doctors. I remember them asking Mike, "What's her name, what's her name?"
They gave me water and a few minutes later I was conscious again. I stood up. On the foot of Alexander's bed there was a little brown sandwich bag, the top was folded and it was closed with a white label with Alexander's name, ID number and the treating physician. I opened it. It was filled with his little brown curls. They had cut and shaven Alexander's hair for the operation and saved it in this bag. As tears rolled down my cheeks, I put the bag into my handbag. As I write this, I still have this little brown paper bag with his very special hair.
Our world had gone mad. Mike and I stayed with Alexander until 12:30 am. He had been given some morphine for the pain and was sleeping. Then Mike and I made one of our biggest mistakes during Alexander's ordeal - that night we left his bedside. The nurses said that he would be sleeping until the morning and asked us to get some sleep too. They called a hotel that was walking distance from UCLA. We said if he wakes up please call us. They promised they would. We gave Alexander a kiss and left around 1:00 am. We were zombies. We arrived at the hotel and fell asleep.
We returned to the PICU around 8:00 AM the next morning. Alexander was still sleeping a little. I talked to him and caressed him. For the next six months, this touching and caressing would sooth him during the most unbearable pain. I would coo to him in French, "Je suis toujour la mon amour, je suis la," and he would know that he was not alone, and his mommy was there to be with him and protect him from harm.
At 9:30 am Alexander was awake and I asked the nurse to help me change his position in bed. As we were turned him over to his right side I suddenly saw bright red burns and blisters on his left side over his shoulder and back. The skin was blood red. Large pieces of skin were stuck to the sheets. I started shouting.
"What the hell is this! Get me the head nurse!"
The nurse that he had was quite young and she didn't know what to do. With my shouting several nurses arrived at his bedside.
"My child is burned! Will somebody please do something!" I was freaking out.
They called somebody from the burn unit. A young girl came up. She was an intern. She looked at the burns and said, "yeah, you need to put silverdine on it."
I looked at the charge nurse. "Is that cream?" I asked. "You're going to put cream on this? His skin is gone!"
The charge nurse said, "Let me get a nurse from the burn unit, they see this all the time and they will know what to do."
A more experienced nurse explained that they see a lot of children with betadine burns after an operation. I looked at the charge nurse and said, "I want her to take care of Alexander and nobody else, she is the only one to seems to know what she is doing." I was shouting at all the nurses and the floor doctor. I was furious. I held Alexander's hand and waited for the burn nurses to arrive.
The two burn-unit nurses arrived from the 4th floor. They took one look at Alexander and said, "Don't put silverdine on it, we have another material - a burn patch that will work better. We have some upstairs." The charge nurse from the ICU said that they would need a doctor's order. Then nothing seemed to be happening. Alexander lay quietly on his side. He was in a daze. Whatever had burned his skin was still there. No one was doing anything. He was laying in the same sheets.
I started shouting again. "What the hell is wrong with all of you? How long does my child have to be like this? Do I have to go upstairs myself to get the patch or are one of you going to move?"
Suddenly all faces were on me, and they understood that I had had it. Finally, the two nurses said that they would go and get the patch. I was calming down and telling Alexander that everything would be alright. My God, I thought, what kind of place is this?
Mike arrived. He was in total shock when he saw the burns. I said that there were two nurses from the burn-unit that were coming down with some material for Alexander's wounds. When they returned they expertly cleaned the burns, cut the material to fit and placed it on Alexander's raw skin. Alexander did not say anything. He was so good. Mommy was there and I would make it all better. Mike stayed with Alexander as one of the burn nurses took me into a private room and gave me a glass of water. I talked to her about what we were going through and she listened. She was one of the few people that cared about what had been happening to Alexander. I knew that she must be a mother.
While we were at UCLA and even today, many months later, no doctor has ever apologized or explained how or why Alexander was so badly burned. We could only deduce that the burns were not due solely to betadine, because Alexander would have betadine placed on his body over 20 times in the next several months (each time his port-a-cath was accessed). Obviously some toxic chemical had leaked out onto Alexander and flowed under his armpit and down across his shoulder and back. Neither the night nurse nor the day nurse had ever turned him and done a back to front assessment as is required. Alexander had been laying there in pain while his skin melted from his body for many hours before I found out. It would be the last time Mike or I would ever leave him alone in any hospital. Below is a quote from the medical chart that discusses Alexander's burns:
A Less Than Optimum Surgery
Alexander started to wake-up from the effects of the anesthesia and morphine. He was talking. He also started to eat. "Mommy, milk!" was still one of his favorites. But now the full effects of the surgery were obvious. His eyes were a mess. They were stuck pointing in opposite directions. They couldn't move in unison or come back to center. He had one-sided facial paralysis. When he smiled only one side of his lips turned upwards. He lost the ability to laugh and to cry. Nothing would make him laugh. He used to have a spot on his legs that we would tickle and send him into uncontrollable giggles. Now his legs had no feeling whatsoever. His beautiful childish laugh was silenced. It no longer existed. And as for crying, even with all the pain that he would endure in the next five months he would never shed a single tear. But worse was to come. Later we would find out, Alexander couldn't even stand-up or walk anymore.
Mike and I rehashed the surgery in our minds a thousand times. Alexander went in with a tumor and a significant balance problem. He came out with the complete inability to walk, the inability to sit up straight, the inability to laugh, the inability to cry, facial paralysis and eyes that were injured, we would find out later (from a neuro-opthamologist) there were not one but two cranial nerves that had been damaged. In addition, there was still tumor left that was now surrounded by a large hematoma or blood clot. What had gone wrong? No one would tell us. Finally we began to understand when we read Alexander's medical chart. The chart revealed that the surgery had not gone as planned and that a vein was mistakenly severed.
A delicate operation such as the removal of a brain tumor requires an experienced surgeon. Unfortunately, the pediatric neurosurgeon was on vacation. Rather than offer us another pediatric neurosurgeon, a young surgeon, Gregory Rubino who operates on adults, was substituted. Our neurologist told us that Rubino was better than the pediatric neurosurgeon because he was a tumor specialist. His words did what they were meant to do and gave us faith in Rubino's ability. Arguably, the best pediatric neurosurgeon in the Western U.S., Dr. Gordon McComb practiced less than 20 miles away at Children's Hospital Los Angeles. But we were not given his name. (We would have to find out about him on our own.) Instead our two-year old son was offered up to Rubino, the "tumor specialist" of UCLA.
Rubino did not use the brain lab neuronavigational system because the optical tape transfer could not be utilized. This system allows him to operate with the utmost precision. The result of the operation? He left tumor inside Alexander's head, perforated a major vein in Alexander's brain (the right basal vein of Rosenthal), and created a large hematoma (blood clot). Alexander would be left with the inability to sit-up, stand, walk, laugh or cry. His eyes would point in opposite directions. In fact, the MRI after the operation had revealed the large hematoma in Alexander's brain but no one would explain what had caused it. Below, are the notes from Alexander's medical chart. The first entry is Rubino's:
8/13/98 - Operation
8/14/98 - CT of the Brain
A Drug Cocktail
The next day, the doctors decided that they wanted to do a postoperative MRI. Now to do an MRI the child must be asleep. For Alexander, this can be done very simply by administering nebutal. This drug would be given to Alexander over and over at CHLA every time he would get a MRI. But sadly for our son, that did not happen at UCLA. In the PICU, a few moments before they transported Alexander to the MRI suite they gave him 2 mg of ativan. When they got to the MRI suite five minutes later, Alexander was still very much awake. He was looking around as best he could. With his beautiful eyes pointing in two opposite directions we don't know what he saw. But because they had given the ativan too late and the MRI was ready they had to give Alexander more drugs to quickly put him under so they administered 1 mg of morphine. They waited a couple of minutes. The MRI was empty and waiting. They had the machine reserved for Alexander for an hour and the clock was ticking. Unless Alexander was asleep soon they would miss doing his MRI. Alexander was getting drowsy but he was still awake. The nurse and technician lifted Alexander from his bed and placed him on the sliding gurney that is withdrawn into the MRI machine. Here they needed to strap down his head, arms and legs but Alexander was still very much awake. So the nurse administered more ativan. At this point, Dr. Rick Harrison, the PICU attending physician, came down to the suite because Alexander was beginning to get a drug cocktail and he wanted to be there to oversee. They waited a few more minutes. Alexander was still drowsy. They began strapping him down but Alexander made it clear that he did not like it. Harrison, the nurse, the technician all waited. The reserved MRI time was beginning to run out. Harrison seemed to be getting nervous. "Let's give him some Benadryl," somebody suggested. So they administered 10 mg of Benadryl. They waited. Alexander was still awake. Then they gave him 10 more milligrams of Benadryl.
"He's still awake," I said. I was holding in my arms on a chair. Clearly these people knew nothing about how to make a child go to sleep. They kept giving Alexander one drug after another but he wasn't sleeping. Alexander was in my arms looking at me with a daze in his eyes and repeating over and over again: "Mommy, mommy, mommy". My poor baby. I wish I could take him home. This nightmare should be over now. This was enough. Enough pain. I just wanted my little baby boy back.
Harrison was sweating and explained that they needed to the MRI and time was running out. I was going nuts. This was too much. If they had given him the right drug at the right time he would be sleeping now. Mike tried to calm me but it wasn't working. Then Harrison ordered 625 mg of chloral hydrate.
"Is he going to be OK?" Mike asked Harrison.
"It's a cocktail. Some kids need a cocktail to go to sleep don't worry we're monitoring him here," he said. "We're watching his respiration and pulse," he added.
We knew what he was saying. If the drugs compromised Alexander's respiratory status (i.e. stopped him from breathing) at least they would know about it. I was pulling my hair out at this point.
More drugs were injected into Alexander's veins. More waiting. Then he seemed to be asleep and they quickly strapped him down and withdrew the gurney into the machine. They started the MRI and watched Alexander on a video monitor. There I could see his blanket covered body strapped head to foot as he lay in the entrails of this huge machine. But soon he started to move. He had woken up. They stopped the machine and withdrew the gurney. Harrison's face was beet-red and he was sweating profusely. "Let's give him some more morphine," he said and Alexander was administered another 1 ½ mg of the drug. Alexander slept. His powerful heart and body had finally been overcome by ativan, morphine sulfate, more ativan, benadryl twice, chloral hydrate and more Morphine. All of this going into the body of a two-year-old. Instead of giving him nembutal, they risked injuring Alexander with this dangerous mix of drugs. Below is the note from Alexander's medical chart:
The surgeon lowers the ventriculostomy
And Alexander loses consciousness
Rubino, the young neurosurgeon, had found out that we were transferring Alexander to Children's Hospital Los Angeles (CHLA). He wanted to do a second surgery to remove the blood clot and the rest of the tumor. We told him "no thanks." We had scheduled Dr. McComb, a more experienced pediatric neurosurgeon, to do the second operation. Rubino then told us that we couldn't leave UCLA until he put a shunt in Alexander's brain. The purpose of a shunt is to route excess cerebral spinal fluid from the brain into the digestive tract. The assumption is that once opened to the outside, the brain can no longer equalize the pressure by itself. The problem with the shunt is that it creates a highway for cancer cells to spread through the rest of the body, and in a child it has to be repositioned and lengthened as the child grows. In addition, it provides another way of getting a life threatening infection. Mike told Rubino that he wanted Dr. Gordon McComb, Alexander's new doctor at CHLA to make the decision as to whether Alexander needed a shunt. Rubino told Mike that he thought it was dangerous to have Alexander moved with the drain or ventriculostomy in place. Mike worked desperately to get Rubino and McComb to speak to each other on the phone to work out any details regarding Alexander's transfer. Finally, after a number of attempts he was able to get the two surgeons to talk. After the conversation, Rubino appeared perturbed but agreed to let Alexander travel with the drain and no shunt.
I couldn't wait to get out of there and to take our son away from this place. What were they these people thinking? That they could operate on Alexander give him "some" deficiencies, burn him and think we were just going to take it smiling? Mike and I have never been sheep and we certainly were not going to stand by and shut up now when it mattered most. This was the fight for Alexander's life and he would have mommy and daddy all the way.
Linda, one of the burn nurses, came by and said that there would be a nurse that would take care of Alexander at CHLA to follow the healing of his burn wounds. She had already contacted her and she would come and see Alexander as soon as we arrived. We thanked her. Wow, we thought, someone who really cares. What a professional. Linda was the only one who impressed us during our 10 horror-filled days and nights at UCLA.
Then Dr. Rubino came by to say goodbye. You could see that he was not happy. I said to him, "I believe my child needs to be in a children's hospital where they have more experience with these diseases." Then Rubino did something strange. He walked over to Alexander's ventriculostomy, lowered it, and left. The ventriculostomy was a tube that ran from inside Alexander's brain into a bag. It merely drained excess brain fluid at a pre-set rate. The bag had to be kept level with Alexander's ear. If it was too low the fluid would drain too quickly and cause the ventricles (spaces in his brain) to collapse which could kill Alexander. If it were too high it would not drain enough and cause hydrocephalus. This was also life threatening. We had been very careful to keep the level at precisely the height of Alexander's ears during the past nine days. Now, because of Rubino, the bag was lower by several inches. What had before been a slow drip into the ventriculostomy now turned into a continuous stream of brain fluid. It seemed strange but since Rubino had lowered it, we didn't question him. A moment later the CHLA transport team arrived to take Alexander to Children's Hospital. The team consisted of one doctor, a nurse and two paramedics. They began their assessment of Alexander. But there was something wrong. Alexander was in a deep sleep. His eyes were red. We had trouble waking him. The doctor of the medical team didn't like what he saw. He said that before Alexander could be moved we had to do a CAT Scan. The PICU attending doctor, Dr. Weiss said, "He's just a little tired." The transport doctor didn't agree and insisted on a CAT scan. As the two doctors were talking Mike and I tried to wake Alexander up.
"C'mon Alexander. C'mon Alexander. Alexander! Alexander!" Mike yelled.
Alexander wasn't stirring.
"We need to do something!" I shouted.
"Alright take him down for a CAT scan," Weiss agreed.
Mike left Alexander to find the nurse who understood the ventriculostomy. He had her return to Alexander's bed with him. Immediately she saw that it was set incorrectly.
"Who did this?" she demanded.
"Dr. Rubino," Mike said.
She said nothing but quickly returned the drain to its earlier position. A moment later Alexander was rushed down for an emergency CAT scan.
Finally after an hour and a lot of stimulus from Mike and I, Alexander finally awoke. We were relieved but we were still at UCLA and now all we wanted to do was get out! Below is a note from Alexander's chart that discusses this occurrence:
8/20/98 - CT of the Brain
Why would Rubino do this? Was this an innocent mistake? Was he tired? Or was he angry that we were taking Alexander to another surgeon and this clouded his judgement? We don't understand his actions to this day.
© Raphaele and Michael Horwin, 1999 - 2002