Saving Zali

by Lisa Venables

  He performed an ECG (electrocardiogram) on her heart. Za was scared at this change in her routine as the lights went off and a giant machine that looked like the control board for a rocket ship was wheeled next to her. She started to cry.

  I asked Dr Roberts if this would hurt. I didn’t know what it involved. I had never known anyone who’d had an ECG. He assured me it wouldn’t hurt at all but he needed Zali to be calm and lie still while he did it.

  I reassured Zali: ‘It’s okay, this doesn’t hurt.’ As I had been 100 per cent honest with her so far she calmed down. I held her hand as the doctor did the ECG. There should have been many lines going across a paper readout with wobbly but regular peaks and troughs like a simple landscape of mountains.

  Instead Dr Roberts could only get a measure on three lines, each line waving wildly into the territory of the other lines, crossing over each other with no regularity at all. He took an ultrasound wand and began to examine her heart by pressing the wand onto her chest. As he fiddled with the buttons and turned dials there was not much difference in the quality of the picture that I could see. In some places he stopped the machine and typed in identifying markers but overall it was a picture of large white shields and faint grey lines.

  He told me he would look at her major arteries and that this may cause some discomfort for Zali.

  I warned her. ‘Za, he’s going to push on your tummy and legs a bit. I don’t think you’ll like it, but it won’t hurt and I’ll blow some bubbles after it, okay?’

  Zali nodded and mouthed okay. As Dr Roberts pushed the wand around her stomach to find the iliac arteries on each side, Zali was in discomfort. Everything hurt her but he was quick and got what he needed. It didn’t hurt so much on the femoral arteries at the tops of her thighs, and at least she couldn’t move her legs out of the way to cause a problem for him. They were still limp under her body. Again Dr Roberts got what he needed quickly.

  The entire ECG and examination took about an hour. Dr Roberts was kind and gentle and patient, and had a soft and caring touch when he put his hands on Zali. It was important to me that people touched her kindly. Due to the infection risk people didn’t touch her a lot.

  Dr Roberts didn’t write anything down after this examination. I watched him as he turned buttons off on the giant panel and I repositioned myself in my chair, bringing it closer so I could see his face from the side. He was pushing buttons automatically without looking at them. I could see him thinking. It was a tough-maths-question type of thinking face. The emotion was, ‘How do I carefully tell her my answer?’ I don’t know what emotion that is. Careful, intellectual caution perhaps?

  Dr Roberts turned and was surprised I had moved so close. He explained that they had called him when the results of the CAT scan had become known and asked him to check her heart for himself. He had checked her iliac arteries, femoral arteries, ventricles, heart muscle and lining of the heart by ECG, examining the CAT scan and through ultrasound. It was nearly impossible for him to see the heart as there was too much calcium covering it, and Zali’s level of distress when checking her stomach arteries, the iliac arteries, made it difficult to know for certain but he did have an answer.

  Every major artery in Zali was calcified and nearly completely blocked because of it. Her heart muscle was a large rock of calcium. The lining of her heart had calcified. The entire wall of the left ventricle had calcified too. It was possible that this was a result of the disease being in these areas but without biopsies it was impossible to know.

  He took a deep breath, paused, then said he had no idea how to fix the problem.

  He had never had a patient with such extensive calcification. He had once had an adult with a partially calcified ventricle, not at all to the level Zali had, and the patient had passed away quickly from this condition. He didn’t know of anyone in his field anywhere in the world who had treated a person with such a serious condition, child or adult. There was nothing in the medical literature.

  It was a cold, hard slap in the face and it made me gasp.

  This was the first time I felt like I had hit an absolute brick wall. Even when the first lot of chemotherapy hadn’t worked, Professor Kellie had offered something from left field. This time there was no answer for why Zali was still alive, and no answer for how to fix her heart. I don’t think the PICU staff had realised this when they had told me the news so excitedly. I feel that perhaps, like me, they had assumed this was fixable now it was identified. I wasn’t prepared for this answer.

  Dr Roberts said he was attending a conference soon where he would approach others about Zali’s case to see if he could gain some insight. He was very sorry, but at this point he did not have a solution for us. In my opinion, Zali’s persistence in living was causing problems that could only be dreamt up in hell.

  Chapter 46

  Friday 18 September 2009, 139 days in hospital

  92 days in PICU

  6-8 weeks left

  Doctors are as varied as the diseases they treat. We experienced a wide range of skills, both interpersonal and medical, through the various doctors we had.

  One notable doctor, let’s call him Dr Y, we had in PICU was a scientist first and a healer second. To his credit, I imagine his research is probably devastatingly insightful and thoroughly referenced, and in his niche I’m certain there is no one with better knowledge. Unfortunately, though, these qualities don’t translate well when he is speaking to distraught parents. His personal skills were wanting, to say the least.

  He was old-school. He had obviously spent many years being admired openly and sucked up to earnestly for his noble endeavours in the field of medicine. He was arrogant: he didn’t notice when other people were talking; he began other conversations with people he thought were more important when someone was speaking to him; he didn’t remember the nurses’ names or even recognise the face of a nurse who had worked at the same hospitals as he had for twenty years.

  I imagined during my many idle hours that he spent hedonistic days and nights in gentlemen’s clubs, decadently puffing on a cigar while sticking his nose into a complex brandy and guffawing at the ignorance of those beneath him.

  Before the CAT scan, Dr Y had suggested that the best way to find out what was wrong with Zali’s heart was to perform a biopsy on the heart lining and take a piece of the calcified tissue. It was extremely risky, and the likelihood of Zali dying during such an operation was very high. More than likely, in fact. Dr Roberts the cardiologist had explained after Za’s ECG that other doctors around Za wanted him to do this biopsy to see if the disease had travelled to the heart, but that he wouldn’t do it because it was far too risky.

  That Dr Roberts said no to the biopsy immediately after the ultrasound on her heart didn’t stop the excitement about it. The more the various specialists talked about it the more excited they became by this option, especially Dr Y. The scientific insight such a sample would provide would make many careers, and fascinating reading for people in such fields. There were only two difficulties stopping it. Firstly, we were against it; if Zali was going to die, we wanted that to happen on her terms and not to throw in the towel to oblige science. Secondly, Dr Roberts was the only person qualified to take such a sample, and he was away at a conference and wouldn’t return for several days. We did get the feeling that if he rethought and decided it was in Zali’s best interest, we wouldn’t have a say.

  On Tuesday 22 September he returned and saw us before his meeting with the various professionals about what direction to take. He told us that nobody he had spoken to knew how to fix Zali’s heart. He explained the biopsy situation in laymen’s terms to us, and asked us what we wanted to do.

  We told him we didn’t want to do anything that would put Zali further in harm’s way. We felt very uneasy about such an operation, but he was the expert, and if he thought she would live through it, and it would cure her, then we trusted him. We only cared about curing her.

  Dr Y came and saw us after this visit. He clear
ly had no idea that we were worried about the possibility of this operation killing Za. He gushed excitedly that he was absolutely fascinated by the fact her heart had calcified and she was still alive. He was thrilled to have an answer that had eluded him for several weeks, and not knowing what it was had really annoyed him. He had never heard of anyone surviving it before and from a treatment perspective it was very interesting. In fact, he was writing a paper on it with another doctor from the unit. The sample result would really be very interesting indeed to science, as it would show whether the disease had in fact been in her heart.

  It would also be exciting, as no child with Zali’s version of LCH had ever survived this long to be this sick, and it would be the first time it was reported in the heart. Of course I knew already, didn’t I, that inflammation caused by LCH causes calcification, which would explain the strange bumps and lumps she had over her little body. Really interesting, he gushed.

  I just stared at him, for once absolutely out of words. Zali was a science experiment, a topic in a paper.

  That afternoon Dr Roberts came back to see us. He told us that he had told the other doctors that if Zali was his daughter, he wouldn’t do it and that they wouldn’t want it done on their daughters. He wasn’t going to take the biopsy, and they would have to find another way around it.

  We were so relieved. Dr Y was so disappointed and told us so. He even sulked a little. Honestly, even in a hospital full of world-class experts there was just no helping some people.

  Chapter 47

  September 2009

  The most amazing physical aspect of the hospital for me was the amount of art in it and around the gardens. It is a gallery in its own right with a curator. There are lots and lots of artworks from the children, some of it relating to their own struggles, some just normal art done in the school, or just filling-in-time art. It’s really amazing and comforting to look at, like being at home surrounded by your kids’ artful insights and doodling. There are also sculptures and professional art pieces. I related very deeply to one statue in a way I had never felt about art before.

  The statue is in the courtyard of the hospital high school. It is of a mother holding a small, bald, nude child. Her arm is around the child, the child’s bottom in the crook of her arm, her other hand supporting the child’s back. The child’s face rests on her breast as the mother looks down at it. The serene look on the mother’s face is that of any mother patiently holding a child to soothe them. The child looks about eighteen months old just by the length of the body.

  I was critical of the statue at first because although the mother was in perfect proportion, the child’s proportions were all wrong. The skinny legs hang from the body like a puppet’s legs, the stomach and chest are small in frame but the stomach is round, almost bloated. The neck does not look like it would support such a large head as it’s so skinny. The head is the right size for an eighteen-month-old except it’s bald, and the face does not have enough muscle in it, making it appear distorted like an alien head with large eyes. The child’s face is old, deep, patient and weary.

  At first it annoyed me that such an apparently flawed statue could be so prominently displayed. As I walked through the glass-walled corridor it confronted me from the courtyard. However, as time went by we began to resemble that statue. As Zali spent more and more time in bed in the Variety Ward she eventually lost the muscle tone in her legs. They hung off her hips limp and skinny and long. Her stomach was bloated some days from fluid, disease and side effects, and sunken on other days for the same reasons. Eventually, she lost her hair, though she looked perfectly natural and normal to us. As the ravages of treatment took their toll, the muscle wastage moved to her face. Her cheeks deflated when the steroids stopped and she developed a hollow-cheeked look. She was weary and battle-worn, and her head was generally too heavy for her neck to lift if she was sitting upright on my lap. The statue is a haunting, accurate portrayal of a mother holding a sick child. When we were in Variety Ward it was nice to see it, because I was reminded that I could provide comfort and solace to my weary child.

  When Zali was in the PICU I became jealous of that statue. I hated it. There was nothing I wanted more than to hold my child. I wanted to be able to sit calmly with her on my lap in whatever condition she was in. I wanted to wrap my arms around her and hold her to my chest. I wanted her to feel my physical support, her head against my heart, absorbing my love as we waited through this ordeal together. It was painful to view what I couldn’t have.

  Three times in the PICU the nurses helped Andrew and me cuddle Zali, and they were all in the last few weeks. It’s possible the nurses felt that the end was close and a cuddle would mean a lot to us if we lost her. I needed it so badly my body ached. I sat with her every day, holding her hand, stroking her arms or legs or face, whenever there was space to touch her skin through the splints and tubes and lines, but it was so limited.

  It was a very precarious movement to put Zali in my arms because the ventilation tube had to be kept straight so it wouldn’t bend and cut off her oxygen. The lines had to be gathered into a handful but kept still so they didn’t twist under her skin. The lines surrounding her body looked like thousands of wiggly-drawn coloured crayon lines around her body.

  It took two people to lift her as she couldn’t move herself. The machines and lines and ventilation were moved quickly out of the way and she was placed in my lap. I cradled her like a baby. She cried her silent protest in pain and fright. She was uncomfortable on my lap but eventually she settled and tried to snuggle into my breast as she remembered that peace.

  I cried and cried as she lay there. I was so disappointed I couldn’t bring her comfort. My hug was hurting her but I didn’t want to stop. This wasn’t enough for me and it wasn’t enough for her. I wanted so much more. There was not enough medicine to fix her and no touching was enough to soothe my aching heart.

  After she was placed back into the bed from our five-minute cuddle the fentanyl was increased and she went to sleep. It was a bitter disappointment. I didn’t walk past that statue again after those cuddles. I was so resentful of people who could hold their children that I couldn’t even bear to look at a representation of it.

  Chapter 48

  Monday 21 September, 142 days spent in hospital

  95 days in PICU

  5-7 weeks left

  Time was running out. We had already spent the best part of a week working out the heart problem only to be told it couldn’t be fixed. We didn’t have that sort of time to waste.

  The dietician came before lunch on Monday 21 September and quietly asked Andrew and me if she could talk to us in the corridor outside Zali’s room. She was gripping her clipboard and I could see her fingers were purple and her knuckles white because she was holding it so tightly. She looked at both of us quickly, back and forth, back and forth. She was getting more encouragement from Andrew; I was just assessing her, so largely she addressed him.

  She quietly said that she had reached the end of her ability to fit any more calories into the TPN and that what Zali was getting now was not meeting her caloric needs because of her fast heart rate. It had not been meeting her needs for several weeks now and she had been trying to see how she could get some more in, but it had never been this dense and she simply couldn’t get any more calories into the mix.

  At nearly two years old Za now weighed eight kilograms, three kilograms more than her birth weight. The TPN would not be able to support Zali any longer but they would continue with it nonetheless. The dietician estimated that they would only need to do this for a few more days, at most a week.

  I had no idea what she was trying to say. I wondered what she would change to after those few days. I hadn’t heard of any other replacement food. Her pleading eyes wanted me to understand her. I was willing to try. I liked the girl, but she was going to have to explain further before she got my reaction. All I could see was the tension in her body and her pleading eyes.

  It took me a few minut
es to repeat in my head what had been said, breaking it down into chunks to work out what this meant as we all stood in the corridor. I stared at her in silence and watched her eyes go watery and red. I wondered what she was so upset about. I looked at Andrew, who was staring at the floor, say quietly, ‘Oh fuck, fuck.’

  The dietician averted her eyes from mine and looked at Zali. I looked at Zali and saw her properly. She was sagging, wrinkly skin on thin, small bones. On top of her spindly neck was a skull with giant blue eyes without eyelashes, watching us. The neck barely had enough muscle left in it to make a wobbly slow movement back to centre.

  I saw her for the first time. It was so obvious, but in my mother’s love I hadn’t seen her the way she was. I knew that she was fragile and had muscle wastage, but I hadn’t seen clearly what she looked like. I had spent all day every day with her. Talking with her, playing with her, singing to her, explaining things to her, cleaning her, changing her nappy and loving her.

  The dietician’s statement hit me like a Mack truck. It was a force field of sonic power literally knocking me down as my knees buckled. I saw what she was saying. All over again my heart broke – it felt like it cracked in half this time.

  Despite everybody’s best efforts Zali was going to starve to death and it would be soon. She was a skeleton. I turned back to the dietician. She said she would continue to help over these last few days. She wrapped her arms tightly around her red clipboard and gripped it close to her chest. She put her teary head down, her chin touching her chest, her light brown hair pulled off her face in a low bun, then turned and fled the PICU. I never saw or heard from her again for the rest of our stay in hospital though Za continued on the TPN.

  I gasped as I caught my breath and looked around me. Doctors continued to move slowly from room to room quietly talking with parents and nurses. The nurse in charge looked at notes on a computer screen in the main command area. Machines beeped information. It was impossible to tell by looking at the people around me that we had just been told we would see the end of Zali in a few days. I blinked tears of disbelief. I couldn’t believe this moment had come. I had been robbed.