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Max’s Story

April 26, 2002 was just another ultrasound, a bonus to having twins was the extra times of seeing my two boys on the screen. I was 29 weeks pregnant and so excited, thinking that if we had gotten this far – all was going well and the twins were healthy. But this day would change all that happiness into fear. During the ultrasound it was discovered that twin two seemed to have a problem with his heart, the flows of blood seemed to be restricted to and from certain parts of the heart. But we were told from what could be seen, it was a fixable problem, but we would need a further ultrasound with the cardiologist to determine exactly what the problem was. Needless to say, I was a mess, I thought I was imagining the worst but the next week was going to show me that I could never have imagined how bad the problem would be. The doctor tried to get us in to see the cardiologist straight away but it was a week before we could get an appointment – a very stressful week but of course I always hoped for the best.

Tim and I decided that it was time to name our boys, they needed to be real little people to us and naming them made them feel to us, more that way. Twin one would be Henry and Twin two - Max.

On May 2^nd we had our appointment with Dr Malcolm Richardson. I can still remember the look on his face, the look that told us it was going to be very bad news without him even having to say the words. I never thought my little boy would have a life threatening, unfixable, heart problem. After the scan we went back to Dr Richardson’s room for the heartbreaking news – Max had hypoplastic left heart syndrome. The name didn’t mean anything to me I had never heard of it before but the explanation was devastating. We were told that we would have two options with regard to Max, we could choose compassionate care where we could take our son home after he was born and take care of him at home and we would possibly have him for two weeks before he died, or there was a three stage surgery procedure he could have. He could only have the surgeries if he was strong enough when he was born, he would then have only a fifty percent chance of making it through the first surgery that would be done at two to three days after birth, the second operation would be at about three to six months and there was a slightly higher chance of survival with this procedure and the final surgery at about three years of age. We were told our beautiful unborn son Max was safe while he was inside me because my body was doing a lot of the work and also while he was inside me he had an extra valve in his heart so his condition would not be a problem until he was born. But long term we were given a very grim outlook, Max would be lucky to make it to early childhood, he would be sick and weak all his life, there was a chance of losing him at any time.

Suddenly, it went from being the most exciting time of our lives – expecting two beautiful, healthy boys to come into our family within the next couple of months, to being the most stressful, emotional, uncertain time. The feelings are difficult to put into words. Although we’d been given such an awful outlook to Max’s health, if I could not keep some hope that a miracle could happen, it was just too hard to accept. I already have two beautiful children – Madison and Tom – and I would find myself just watching them and realising that I just couldn’t bear to see any of my children so ill. But it wasn’t a choice, it was just something which was now part of our lives and we just have to figure out how to keep going. Max just had to be okay, that was the only possible outcome that was acceptable to me. We gave compassionate care of Max some thought, but to take him home and just let him go just didn’t seem fair, we had to give him a chance of life. So then started our hunt for some more information about Hypoplastic Left Heart.

I’m no computer whiz, actually I’m pretty shocking on the computer but Tim managed to find a couple of sites on the internet, one being the Hearts of Hope site. I would sit down and read the stories through a blur of tears and hoped that my little Max would be one of the lucky ones. It took a while but one day we did come across a family in a similar situation to us, (in America)– expecting twins where one of the children had HLHS. There twins were due about a month after Henry and Max, it was just good to have someone to share thoughts with.

On following appointments we were told not to get our hopes up, I guess with Max being a twin there was a big chance he would be born to early and not be big enough and healthy enough for the surgery. We were told by another doctor that Max would be having one experimental procedure after another and would have no quality of life. But we kept our hopes up, read stories on the internet of children who have HLHS.

For ourselves it was not only a heartbreaking time, knowing Max would be born so unwell, but it was also a very difficult time because of all the uncertainty that we were faced with. The choice of whether to take Max home and let him go or try the surgery option – there was only one alternative to us – we had to give Max every chance to experience life and we had to give Henry every chance of being able to know, grow and play with his very special twin brother. After that decision was made the uncertainty really kicked in. Max was only able to go to Melbourne for the surgeries if he was strong enough. Max being a twin was given the ‘miracle’ chance of even being able to go to Melbourne. I guess with twins being born early and weighing less, that gave Max a more gloomy outlook. But we tried to keep as positive as we could. My days were so up and down. I knew that if I lost my little boy I was not going to cope very well at all so I tried to be positive, I had to be positive, it was the only acceptable outcome to me. If Maxi were to be born well enough to go to Melbourne we needed to have the house packed up and ready to go within a day or so of giving birth to the twins and that day was also an unknown. We packed up the house and left only minimum possessions out so that we could still live at home up until the birth and after if need be, but so our family could just pack up what was still left and put it in storage if we were able to go. We both took leave from our jobs, initially for three months in case things didn’t go so well or for six months if the outcome was what we wished for (luckily we both had good employers). We had a land agent ready to come in and clean up our house and rent it out so financially we were able to pay our mortgage while we were in Melbourne. Finances were a mess because not only did we still have to cover our debts and bills at home but we also had to pay rent in Melbourne, all on no income. Such a stressful time but of course all that really mattered was Max.

The big day was getting closer, scans were no longer something I looked forward to. I couldn’t understand how I could look at both my boys and they looked exactly the same and yet Henry was to be born perfectly well and Max would be fighting so hard for his life. Up until 30 weeks I thought I was having two beautifully healthy babies, this wasn’t suppose to be happening. I kept thinking of all the things I had done that could have made Max’s heart not grow properly, I felt so guilty. I felt guilty for initially wishing that I would have a little girl, although when I found out it was two boys I wouldn’t have changed it for the world (or at least when I got use to the idea, which took about a whole day). I wished that the day would not come that I had to have the boys, because I knew that Max was okay while he was in me, it wasn’t until he was born that he would start to deteriorate. The scans started to show that Max’s growth was dropping off. I hated going to my clinic appointments and all the doctor’s decisions were made on Henry because he was my healthy one, it was like Max wasn’t important, but he was so incredibly important to me. But towards the end when it was known that Henry would be okay, Max seemed to become more important in their decision making.

Finally it was the day to make the big decision – what day would I be induced to have my boys. My doctor was wonderful, he contacted Melbourne to find out the best day for having the boys in regard to transporting us all to Melbourne and scheduling Max’s surgery if this were to be an option. Friday, June 28^th, 2002. We were to come in on the night of Thursday 27^th June to be induced.

With my two previous children, Maddy and Tom, this had been such an exciting time, this time it should have been twice as exciting but it wasn’t. I so much wanted to be able to see and hold my boys but I didn’t want to make Max sick. It was also hard when people would come up and talk to me about my pregnancy, especially when they were unaware I was having twins and the health of my boys. People don’t understand that devastated feeling I had even before the boys were born because I was just so worried about Max. Poor Henry didn’t get a lot of thought, but of course both my boys were so important to me.

The night came to go in to hospital, it was very hard. I had to say goodbye to Maddy and Tom, not knowing how long it would be before they would be staying with me again (when we could get them over to Melbourne with us). I had never been away from them before. It was a very busy night at he hospital we waited in our room for about three hours before a midwife came and let us know that they were understaffed and very busy, with twins being born just across the corridor from us and that it was not ideal for us to be having the boys when they already knew there were going to be complications. So it was decided that we would wait for the next morning. What a long night. I was induced early the next morning and because of such a stressful, sleepless night, I was now having trouble staying awake – so was Tim. It was just after lunch when we were told that we were almost there, so I really had to try to stay awake now. My best decision – an early epidural, I could feel what was happening but there wasn’t much pain and I was surprised when I was told that I was about to see my boys for the first time.

I knew Henry was coming first so I was getting a little excited. The room was suddenly full. My doctor was beautiful, at such a difficult time he managed to come in and make me laugh, my midwife was going to deliver Henry and then he was going to have Max. We also had the two humi-cribs in the room, a doctor (the head of paediatrics – which gave me a little reassurance that they were in good hands) and nurse for the boys, the cardiac team was outside waiting for Max.

Henry came out first and I got to hold him straight away, he was so beautiful. And then the doctor said here comes Max, I remember asking him what I should do with Henry and he said how about you just hold onto him, so that’s exactly what I did. Henry came out very easy, I just felt like I needed to push and out he came. But once he was out I didn’t feel like I needed to push anymore, so Max took a little more effort. He had so much room to float around that he turned slightly and tried to come out shoulder first, with a bit of a push and a twist he was also out. I got to hold him straight away too, I was holding both my boys at once, there was no better feeling than this and they were both so beautiful. Max got whisked away very quickly though and it was just me and Henry and a doctor with the needle and thread. I couldn’t help but to cry as they took Max away from me, I had no idea whether or not he was alright, to me he looked perfect and far to adorable to be sick but I knew he was. Tim was able to go with Max and Henry was stuck with me. They were born 13 minutes apart. Henry looked just like his sister when she was born and Max looked just like his brother – obviously we only had two different moulds.

I called the family straight away, thinking if Max was okay that we could be off to Melbourne any time – never even thinking that what was about to happen could really ever happen. They were all in in a flash. Tim came back with our cardiologist and the good and the not so good news. Max was okay and on the Prostin to keep his extra valve open and we were able to go to Melbourne – that is when the cardiac surgeon gets back from holidays. Again I was in complete panic, I had been induced to have my boys at the perfect time for Max to go to Melbourne and have his surgery all the arrangements had been made but no-one knew that Dr Christian Brizard was on holidays – I couldn’t believe this could happen but I was reassured that it would not effect Max’s chances.

Although I had told everyone to come in and see the boys, it wasn’t long before I needed my own space, I hated being away from Max for even the shortest time. I loved to just sit beside him and hold his little hand and stroke his beautiful soft skin, he just looked so perfect and so sweet. Because of all the cords and tubes connected to him, he was a little difficult to hold but every time the nurses would even half suggest that I could have a cuddle, I had my arms out waiting for him. It wasn’t the same as cuddling Henry though, I just wanted to hold him tight and kiss him all over, but I had to be so careful not to pull on any of the cords, or knock the needles and the cords only reached a very small distance. Poor Henry, Max was just the centre of my attention when I was holding him, nothing else around us got any attention (although I always made sure I could reach Henry too). The nurses were great, they knew that my time holding Max was so restricted, and Henry had a tendency to be the perfect baby but as soon as Max was in my arms that little cry would start, there was always someone who would give Henry a cuddle for me so I could hold my special little angel for just a little while longer. The best times were when both the boys were settled and the nurses would hand me Henry too, so I could hold my two precious boys together. How lucky could I be, I had been blessed with the two most special boys and to hold them both in my arms just made my heart overflow.

On Saturday afternoon I was told that I could express some milk for Max and he would be able to have that instead of the fluids he was on and then for the best news which came the next morning – I was able to feed my son. It may not sound like much but it meant everything to me, it meant being able to hold him so close – for the first time I really felt like his Mum. Up until now I wondered if he really knew me, know I knew he would. He was perfect, he fed so well.

The doctors had decided that Max’s saturation levels were sitting too high, for a normal person 100 percent is perfect, for Max it was too high as his heart functioned so differently. He needed to have a clear box over his head that had nitrogen blowing in to try to keep down the oxygen concentration that he was breathing in. And it wasn’t long before my holds had to be further restricted so that Max was not breathing in too much normal air. I was only able to hold him for a maximum of 20 minutes at a time. It was now when I appreciated being able to feed him even more, I would hope that he would feed for a long time so that I got to hold him just that little bit longer. I tried to make sure that every three hours I would be sitting at his bedside waiting to hold him and feed him, it didn’t matter what time it was – I didn’t want to miss out on a single precious moment.

Plans were made for us to be taken to Melbourne on Monday morning along with another child who needed a similar surgery to Max, (Max would be three days old and yet so much had already happened and so many emotions had already been touched). I would be admitted into the maternity unit and Tim could get a fold out bed in my room. It was not until they told me about Max’s transport that I was quickly reminded just how sick he was. The babies would have a separate ambulance each, they would have a police escort surrounding them so that no traffic would come in between them, they would drive at 40km/hr to the airport where they would drive straight onto the tarmac to the air ambulance that would transport them to the Royal Melbourne Children’s Hospital. Then came the next bombshell, this time I was very scared about Max’s wellbeing. The surgeon wasn’t due back this Monday but the following Monday, so we were to stay in limbo in Adelaide for another week. We didn’t go to Melbourne just in case Max deteriorated, because no one else in Melbourne would do the surgery and Max would just have to wait, but if we stayed in Adelaide and he deteriorated we would be sent to Brisbane where there was a surgeon who also did the surgery with about the same success rate.

The one good thing about being in Adelaide was that our family could see Max and we were still able to be with Maddy and Tom as well as with Henry and Max. I spent as much time as possible with my beautiful Max, I sat beside him and held his hand, he would hold on so tight, I never wanted to let go. Before he was born I was determined I would be by his side the whole time but by the end of a twin pregnancy and packing up our home I was so exhausted and there was no time to recover – just enter the new chapter of Max’s fight for life. Tim and I came in in shifts, I would spend the morning in the hospital and then Tim would come in, then I would stay till around midnight and I would go home and swap with Tim who would spend time with him until the morning. My feelings were all over the place, the guilt was incredible. I just wanted to spend all my time with my amazing little boys but then I also wanted to still be with Mad and Tom, it was just not possible to be everywhere. And why was Max so sick, what did I do wrong that made my little man so unwell. Maxi spent the first day in Neonatal Intensive Care then he was transferred to the Paediatric Intensive Care for the remainder of his time in Adelaide. We had so many great nurses, they treated Max so well, they treated him like he was a sick little boy who was there to get better rather than a sick little boy waiting to die – the outlook a few of the doctors had given us before he was born and it seemed that some still felt the same even now, but they still did everything they could for him.

Max never looked sick, not to me, he just had a lot of bits and pieces attached to him – he just looked beautiful. It seemed that each time I came in to stay with him there was something new. There was one night they were speaking of intubating Max and I was so worried, to me it was just a sign he was getting weak but they reassured me it didn’t. But we were lucky, all his levels started to improve and he was left to breath on his own, (it seemed that maybe the needle feeding the Prostin into his system had been knocked out of place for a short period of time and this had affected his levels). Although it was decided that he would need to have a nitrogen box over his head so that his saturation levels were not so high. I tried to keep up with what was happening and why, I think Tim under stood probably better to me, I was too worried to think logically. I just knew that his body was so different from that of a normal child and the levels they were trying to achieve were also very different. I couldn’t help but to cry when I first saw the needle in Maxi’s head, which was for a spare line, it looked so uncomfortable for him.

My daughter Maddy, was so gorgeous. We hadn’t wanted to scare her and she was only two so we did not know how much she would understand, but she is a very bright two year old. We told her that Max was going to be born with a sore heart and that’s why he stayed in the hospital. It just happened that the thermometer measuring the temperature that Max was at was a gold heart shape stuck to his chest – Maddy thought that was his sore heart. She would come in with our son Tom (who was 17 months) and she would touch Max and talk to him for a while. Tom would stay with him for about two seconds which was about as long as his attention span but it was still really important to me that they would come in and see him even if it was only for such a short time. The innocence of children is so beautiful, Maddy told me that she would kiss Max’s sore heart and it would be all better – if only that were possible.

While I was a patient myself at the hospital it was great that it was so easy to see Max, I’m sure it was only about a five minute walk away but sometimes it seemed to take forever. But I started to get that feeling of being torn in two. I needed to see and be with Mad and Tom too, so it was time to go home. I never gave any thought to how hard it was going to be to walk out those hospital doors. It was the hardest thing I had had to do so far – I was leaving my little boy behind, or that’s how it felt (even though I was going to be back within the hour). The tears would not stop rolling down my face. After getting home and being able to see and cuddle Mad and Tom, I just needed to be back with Max.

Poor Henry, Max’s beautiful twin brother, he always seemed to be in the background. It wasn’t that he was any less important than Max, it was just that everyone was so concerned about Maxi. In the hospital I was known as Max’s Mum (which I was so proud of) – not Heather, and Henry was known as Max’s twin. Henry was (and still is) one amazing baby. He stayed with me every moment of every day, in and out of intensive care to see Max, backwards and forwards to the hospital, sometimes in the middle of the night and early hours of the morning. He slept most of the time and when he was awake he hardly made a noise, he was just the perfect baby.

Max was so beautiful, he had a perfect little head – nice and round, with beautiful dark lips, a cute little button nose and the most beautiful big, blue eyes, with the perfect eyelashes. He had a gorgeous little body, it looked to right for anything to be wrong. He had skinny little legs with big long feet and beautiful arms with the most perfect little hands. The hands that use to hold on to mine and not let go. I loved to hold his little hands, he’d just hold on so tight like he never wanted us to go, and I couldn’t leave him when he was holding on. Max did sleep a lot, I guess his condition made him a little lethargic, but then again, Henry slept most of the time too. But the most amazing time was when he woke up and opened those beautiful blue eyes and looked up at us.

On Thursday afternoon the hospital counsellor let us know all the details of our travelling to Melbourne and our accommodation plans – we would be leaving first thing in the morning. We were to get a taxi from the hospital after Max was ‘packed up’ ready for the ambulance and then the air ambulance, to get a domestic flight to Melbourne – Tim, Henry and myself. We went home and said goodbye to Mad and Tom and our families and picked up our bags which had now been packed for a couple of months and went back to Max. We spent the night with him, ready to leave first thing in the morning. By now things just seemed to be getting to much for me, I just had to keep thinking that Max had to go through this to have any chance of survival. We filled out some paperwork while we sat by Max’s bed. I filled out the forms for the boys birth certificates and Centrelink forms I came across a question that was very difficult to answer, it asked if the child was expected to live more than 30 days, I did stumble on this question for a moment and then I told myself of course he would. It was like a big adventure was beginning but it was very frightening. We got off the plane and got a taxi to Ronald McDonald House. We were told that it was unusual for families to need accommodation for such a long period of time (as we were hoping we would need accommodation for up to six months) and although the accommodation was great for Tim, Henry and I, it was no good for bringing over Mad and tom, so Tim started having to look straight away for somewhere else for us to stay. We had no money and Ronald McDonald House was free, but we would just have to find the extra money somewhere to find something more appropriate. After settling in for the night we went straight over to the hospital.

They were just settling Max in to ICU, his flight took quite a lot longer than ours. He had to have a lot of new tests done, a lot of tests repeated that were already done in Adelaide. And of course he had a very thorough scan of his heart that would be examined by the cardiac surgeon. It was very confusing at the beginning, no one here wore uniforms and name tags were hard to see, we had no idea who was who and there were just so many faces looking at Max and doing things to him.

The Melbourne Hospital was so gloomy. The intensive care unit was dull and dark and there were just so many very ill children and a lot of older children near Max. But the nurses were brilliant, they just seemed so knowledgeable and were very caring. But I remember going to the cafeteria and from the one spot where I stood I could see three mothers in tears, one in the caf, one out by the stairs and one in the corridor, all had obviously received devastating news. At this time I was still sure Max would pull through. Even after the first surgery, I remember going for a walk to stretch my legs, there was a man coming towards me with his friend, when his phone started to ring, he answered the phone and feel to his knees – howling in despair, and still I was sure that I would not be in his position, not knowing that in less than 48 hours I was also going to be given the worse news a parent can ever be told.

Max’s second day in Melbourne, luckily it was decided that Max could go on the cardiac unit until his surgery instead of spending all his time in intensive care. There were not quite so many deeps and buzzers and it was a little more relaxed and bright. It was also all babies, rather than teenagers in the room. One of the babies had been through what Max was about to and I just wished that Max would be that lucky too. I always looked so forward to being able to hold Max and to feed him was just fantastic, he was so gentle and he seemed to love being cuddled. It was so special to be able to hold him, I had to be so careful with all his leads, wires and tubes, I never wanted to put him down but for his own well being I was only able to feed and hold him for half an hour and then he had to go back under his nitrogen box so that his saturations would stay down.

In the morning while I was with Max Tim moved all our stuff to an apartment at Punt Hill – about a five minute walk from the hospital. The apartment had a kitchen area and a bathroom which made it far better for our children, even though we had to move into a studio apartment that had no bedrooms. It was extremely squashy but at least it was a place to stay. Tim really was holding us together, he was coping far better than I was, I just couldn’t think straight and was so worried about Max, Tim just got done things that needed to be done.

I remember the first morning on the cardiac unit when the doctors were doing their rounds. In Adelaide there could be four or five doctors on rounds, but here there was about 18, it was an incredible sight and then off to the side was this rather slim built man who I was to find out was Dr Brizard. It was an eerie feeling to look at him, I couldn’t take my eyes off of him, knowing that my son’s life was completely in his hands, he was the decider on if my beautiful baby boy would live or die. He was one of only two doctors in Australia who would even attempt this surgery. A precious precious life in just one man’s hands – that made him a very special man.

I was breastfeeding Henry and Max plus expressing for Max, I was starting to feel a little like a milking machine. I was also getting very frustrated with expressing because it was taking me so long to get how much Max needed and it was all that time away from Max, but it had to be done, I desperately wanted to be feeding him.

We stayed by Max’s side, chatted with the other families and the nurses and started to feel a little more reassured that Max would get through this – he still looked so good and so cute. We just held his hand and held as much as we could.

We had a talk with Christian Brizard the day before the surgery (Sunday), before Tim went home. He was blatantly honest on what to expect, which was good. It was a little scary but then again it also made it easier to believe the positive side as well. His outcome statistics were so much better than what we had been told in Adelaide. He gave Max a 80% chance of getting through the initial surgery (far better than Adelaide’s 50% chance). He did say though that he could come through the surgery well but there could be many severe ups and downs. He thought Max had a good little body for the surgery and his weight was okay and he seemed relatively confident in Max’s chances. I left the meeting feeling good, I was sure Max could fight his way through this. I was sure that one day I would be able to put my two boys in their twin pram and take them for a walk around the neighbourhood (I would only ever see this day in my dreams). He also said that Max could come out of surgery looking great, but it didn’t mean that he would be all okay, things could change around very quickly. But I left the meeting feeling so confident. Up until now Max had seemed like a normal little baby. He was far to beautiful and far too loved to die. He was my beautiful little boy, who I love so much and he just wasn’t allowed to go. I guess up until now though, there was a real chance that we may lose him but after being given statistics that were just so much better and with Christian’s positive outlook for an unknown but always improving chance of life into teen years and beyond – how could my beautiful Max possibly die. In this situation, all parents need to have hope, and there is definitely a lot of hope for these children and I was very glad that Christian was able to enforce that our hope was justified, even if we were going to end up with the unthinkable result.

After our meeting with Christian Brizard, Tim had gone home to get Maddy and Tom and bring them back to Melbourne (as we didn’t know when would be the next possible chance to get them – as we knew it would be way to hard to leave Max while he was recovering from his surgery), it was the hardest day, to date anyway. I looked at my beautiful little man and he looked so perfect, he seemed okay but I knew to give him the chance of a future we had to let him have a life threatening surgery, but hopefully a life saving surgery. I just wanted to keep him how he was because at present he seemed safe. I didn’t want them to take him away, I just wanted to keep holding his hand.

I guess one thing that really made me realise just how different Max was, was when they had to do some final tests before surgery and had to take some blood. I watched my beautiful little boy be jabbed with needles so many times and see they couldn’t get enough blood. Max just cried, he had had enough and the doctors just kept going, eventually they gave up, they obviously weren’t going to get the blood they wanted. They had to wait until surgery when a central line was put in to get any more blood that they needed for further tests. It showed how different Max’s little body was and how the heart just wasn’t pumping the blood around his body. It was so hard to hear him cry and know that he was in pain, I couldn’t help but to cry with him. I could see that he really was fighting so hard to stay so stable.

I remember the night before his surgery, he had had a very tough time with doctors trying to get blood from him – which after many times they didn’t get – and he was so awake. Henry was fast asleep, but I laid him up on Max’s bed right alongside him, Max just laid there and watched Henry like he was just taking him all in. It was so beautiful, it was like Max knew that was his very special brother laying there right alongside him and that he was proud of him.

Late that night my Mum and Step Dad arrived in Melbourne, they came by the hospital to see Max. I was really glad to see them, Tim hadn’t got back yet from Adelaide and it was also a chance for them to see Max before his surgery while he was still awake and alert and beautiful.

I spent the night with my precious little man, there was no where else that I wanted to be. After months of the unknown, the conclusion to the first chapter was only just around the corner. I wished that I could write the ending so that it would be just right. I wasn’t able to feed him anymore, he had to fast before the surgery. I tried to stay awake all night, but I was just so exhausted and Max was fast asleep – so was Henry.

I gave him a good morning kiss, raced back to the apartment for a shower and then back in to see Max. Tim and I waited anxiously, watching the seconds ticking over on the clock, holding Max’s hand and telling him over and over again how much we love him. It was such a big morning, it felt like the decider, emotions were at the extreme, I think our stress levels were almost at there peak, but then again they had been pretty close to that now for the last two and a half months of uncertainty. I did feel that Max was in safe hands here though, he was in the safest hands he could be in. Just before Max had to go to surgery the nurse asked if I would like to hold my precious little boy. I wanted to be so selfish and hold him but I knew that Tim had gone all the way home to get Mad and Tom for me and missed out on a lot of precious time with Max and so I asked if Tim could hold him – we couldn’t waste his energy now and both hold him. All I wanted to do was give him a great big cuddle and hopefully then he would know how much I love him – I’m just hoping he knew anyway.

They came in to get Maxi and we walked with him to the operating area and gave him a kiss goodbye and told him we loved him and would see him after his surgery.

I was so exhausted, I went back to our tiny apartment to where Mad and Tom were waiting, they were going to get me through today. I fell asleep holding onto my princess for a short while. Max spent about nine hours in surgery. We waited anxiously for the phone to ring and eventually it did. The surgery had gone well and we would be able to see Max at about 7pm. It was still a little way off but I raced across the road back to the hospital. It was 7pm on the dot and I pressed the ICU intercom (I hated these things) only to be told that Max was not ready to be seen yet – the doctors would be with him for about another 40 minutes. The waiting seemed so much longer but eventually Christian walked out, he said everything seemed to have gone well, that was exactly what I wanted to hear. I went in to Max’s room, I saw him as I got to the door and it was such a difficult walk to his bed. For the first time my little boy looked so seriously sick to me and he looked awful. I thought before that there were so many machines and cords attached to him but now seeing his chest open and seeing him ventilated was pretty much a mum’s nightmare. I could only touch his foot to start with, I was too scared to touch him anywhere else. I had seen photos of other children before Max’s surgery in this situation, but that was other children it wasn’t my son. So I knew what to expect visually just not emotionally. He also seemed a lot skinnier and his veins on his head now were so prominent. I held his hand, for the first time it was so limp, he wasn’t holding mine in return. What was nice, was that I could stroke his head, he didn’t have the nitrogen box anymore. I stayed with Max for a while before Tim came in and then we sat with him together but after a couple of hours I needed to go home for a sleep. I didn’t want to leave him but it was amazing how tiring the stress from the day was, and it seemed that he didn’t really know if we were there, so I just hoped he wouldn’t mind.

But it wasn’t long before the guilt of leaving him set in. It was about 7am when the first phone call came. Max had continued to bleed throughout the night, they had opened his chest up once to remove the clots but they needed to go back in to see why the bleeding had continued. I felt so awful, Max was going in to surgery straight away and I couldn’t give him a kiss good luck. Then about an hour later our first nightmare call came, ‘we have a problem can you come over straight away’. We left immediately leaving Maddy and Tom with Tim’s Mum and I called my Mum to ask her to come over and look after them for us – I was so glad she had come over. We got to the hospital and Christian took us into a small room to let us know what was happening. Max had arrested, he had been put on a heart by-pass machine but we were told children like this who’s hearts function so differently from a normal person had very low chances of coming off. He said that Max would stay on bypass for three hours and then they would turn off the machine, it was then all up to Max. But Christian had told us it really didn’t look good.

We left thinking we were about to lose our beautiful boy. My mind would jump from one extreme to the other. He was going to die. He couldn’t die. Maybe for him it would be less pain and suffering. What was I suppose to think at this time, what would make it easier to accept. I got back to the apartment and gave Mad and Tom big cuddles, fed Henry, expressed for Max (I was getting frustrated with expressing – it took me quite a while each time and feeding Henry as well, I think sometimes I just seemed to get the timing wrong and run out of milk, but it was so much precious time that I was taken away from Max’s side), made some calls to my family to tell them what was happening and try to prepare them for us possibly losing Max today. One moment I would be convinced he was going to die, the next I was sure we would all be sharing Christmas together and Max would be fine. I couldn’t stay at the apartment, Max was just too far away so I went to the waiting room of the surgery at the hospital. I sat watching the hands of the clock and the minutes went by slower and slower. I had a wonderful nurse - Lisa, the poor girl kept checking up on me, she hadn’t had Max before – I figured that must have been such a tough job looking after a parent in a time like this especially one you hadn’t met before. The time came when Max should have been coming off the bypass, then came the next hour, then the next, then the next. Tim came in to the hospital later that afternoon. Lisa could see I wasn’t coping too well and so she found Tim and I a room in the ICU to have to ourselves which was good but so quiet. Mentally I was exhausted, Henry had been laying in my arms all day, Tim was falling asleep across from me and time was going so slowly. I had expected to know one way or the other at about 2pm, at about 5pm we were told Christian should be coming to see us soon, about 7pm the nurse came in and said he would be back soon. I thought she meant Christian – she meant Max. I just had the hugest smile this was now the best day of my life. Max hadn’t come off the bypass so Christian had reoperated and changed the shunt that had been put in the day before – Max was alive.

Dr Brizard came and got us and said we were able to see Max. I couldn’t believe that he could actually look worse than before but still he was alive. The anaesthetist was also there, he explained to us that Max was in a very dangerous stage and we could lose him at any time, he was on maximum machine and medication support so if he were to go downhill there was nothing else they could do for him. And yet I found myself still with a smile on my face – I still had my beautiful, precious little boy. Our nurse – Heather – was great, she just seemed to know exactly what she was doing and she also knew how to look after emotional parents. She let me wipe Max’s eyes with some cream so they wouldn’t get sore – it made me feel like his Mum. I stayed with Max until the early hours of the morning then Tim and I swapped and Henry and I went home for some sleep. In the morning Max was looking so good for a little boy who had been through so much. I stayed by his side all day, one of the other babies that was next to Max on 7 West came into ICU after his surgery and he was doing well too. It looked like Max was on the road to getting better. He was being weaned off some of the drugs, his stats were all really stable. Dr Brizard said with such a good improvement and his stability, Max’s chest could possibly be closed tomorrow.

The day was not all smooth running, at one stage a doctor came in to scan Max’s brain, I had no idea that because Max had arrested and his heart had stopped, that there was a chance of brain damage. How much did my poor little boy have to go through. But his eye movement was good and so was the scan so there was no reason to worry.

I just sat by his bed stroking his head and holding his hand feeling so proud of my little boys. I thought he was getting better – I imagined that it was now only a matter of a day or so before Max would open his eyes and look at me, I couldn’t wait for that moment.

That night when I left the hospital and Tim went in, I was looking forward to the next day, Max was doing so well and tomorrow his heart would be sewn up.

First thing in the morning after feeding all the kids, Henry and I returned to the hospital to see Max. Today his nurse was Sophie. To start with she was very quiet, not as chatty and friendly as Heather but she was a good nurse. I didn’t want to be in her way and the space around Max was very confined and there are a lot of machines that the nurses needed to get to so I asked if she would like me to move right back. She told me No, Max was my son and I needed to be near him, she would work around me – I liked her instantly. After checking everything with Max she chatted with me about how Max was doing and what was going to happen. I thought I was being paranoid, I asked her if Max could arrest again when he was having his chest sewn up. Her response was that it could never be ruled out with Max’s heart being so delicate but it really wasn’t considered it pretty much just didn’t happen. Christian Brizard came in and in his blatantly honest manner said – they would try to sew up Max’s chest, if his heart even fluttered they would leave it and try again another day, he’d be back at lunch time to get Max. The way he told us, there really was no reason at all to worry.

I called Tim and let him know that Max was going in to surgery at lunch time. Lunchtime came and went, it wasn’t until 3pm that they came to get Max. Again we gave him a big kiss goodbye and told him we loved him and we walked him too the doors of the surgery.

We left the hospital so positive that we would come back and see his little chest all sewn up. We were so sick of McDonalds, we decided that seeing as Max would be in for about two hours, that we would go home and grab some lunch.

We got back to the apartment and Tim (being the chef) made us some baked potatoes for lunch, he put lunch on the table and before we even had time for the first bite, the phone rang. Tim got off the phone and didn’t look too happy, it was Dr Brizard he had told Tim the news was not good and we needed to get over to the hospital straight away. We dropped everything, left the kids with Mum and walked as fast as we could back to the hospital. I think we were probably both thinking the worst. The nurse took us in to a room and Sophie came in too. I couldn’t believe it, I think the most insensitive thing to happen on this whole journey – I was anxious and couldn’t sit down, I was waiting for Dr Brizard at the door when I saw one of the equipment men wheeling Max’s cot down the corridor and putting it away in the equipment room – my son was dead, they didn’t even have to tell us. Christian Brizard came in and he looked really upset, he told us that Max’s heart had arrested again when they lifted him up off of his cot and put him on the surgery table and they couldn’t save him. I couldn’t believe it, it wasn’t suppose to happen, it doesn’t happen, why did Max die. Sophie took us around to another room and they brought Max in to us. He looked so blue, he didn’t look right – he was wearing clothes, we hadn’t seen him in clothes before. Sophie picked him up and handed him to me, I had to sit down or I’m sure I just would have fallen over, he was a little bit hard but I could still hold his hand for a little while anyway. For the first time I could really cuddle my son with no cords or wires, it was so sad that we had to lose him before we could do that.

When we lost our most perfect, precious little angel we were so devastated. I had been told so many times how severe his situation was and that things could go wrong at any time but this was my beautiful baby, it couldn’t happen to him. I remember seeing so many parents at the hospital that were there who were in tears, there were parents that had just broken down in front of me in the corridors after receiving the worst news a parent can possibly hear and yet even seeing all of this heartbreak, I still wouldn’t accept that it could possibly happen to my family. Even at times where Max looked so bad, it would enter my mind that we might lose him but it was to difficult to even consider so I just had to hold onto the hope that he would fight through.

My Max was so special, he was so brave and he fought so hard. He went through more in his 13 days than anyone should ever have to go through in a lifetime. He showed me how precious life really is and made me realise that I need to appreciate every moment that I have with Maddy, Tom and Henry. I certainly appreciated every moment.

We lost our son, our beautiful, special, precious little boy. I am having trouble with each day to accept why this all had to happen. But feel so blessed that I was able to have my Max even for just the 13 days. They may have been difficult, but they were the 13 most special days of my life, being able to share them with such perfect baby boys – Max and Henry. I feel so lucky to have given my twins and they certainly were beautiful. I just wish my little Max didn’t have to go through so much to try to live. I miss him and I will love him so much forever and ever, he’ll always be my special little Maxi. I still have Henry and he is so wonderful, but I miss his brother so much. As Henry reaches milestones – smiling, eating solids, rolling over, I just imagine how Max should also be hear doing these same things. Madison and Tom lost a little brother and although they may not have many memories of Max I won’t let them forget him. It is Henry who I am truly worried about. What could possibly be more precious than a twin, one of the closest relationships, lifetime relationships, a person could have. Henry may have another brother in the future but he will never have another twin. Henry will never have a chance to know his twin, but he will always have him in his heart.

Thankyou Maxi for being ours even if it were for such a short time. We will love you forever. We are so lucky to have had you in our lives. You will always be our special son, Henry will always be a twin as you will always be in our hearts.

I would like to send a special thankyou to Dr Christian Brizard, an amazing surgeon who gave our son his only chance, thankyou for trying to help our beautiful Max and for all those other beautiful babies that you have given a second chance of life to. Thankyou to Malcolm Richardson at the Women’s and Children’s Hospital, our compassionate cardiologist who kept Max healthy enough to undergo the surgery and initially diagnosed his heart problem. Thankyou to the wonderful nurses at both The Women’s and Children’s Hospital in Adelaide and the Royal Children’s Hospital in Melbourne, in particular Heather, Sophie and Lisa who not only treated our son like he was extra special but also looked out for his highly stressed parents, and also to the doctors who treated Max along the way. Thankyou to the social workers in both Adelaide and Melbourne who arranged transport from Adelaide to Melbourne, arranged taxi vouchers, accommodation and were always available on the other end of the phone to help us with any problems we had. And thankyou to our families who were supportive of us from the moment we got the news about Max’s heart. An especially big thankyou to my Madison, Tom and Henry who help me to get through every day and although my heart is broken, they give me a reason to smile each day and my husband Tim who I know is also suffering but has stayed strong for me.