My name is Jane Cleary and this is my story:
Sadly, I lost my baby Archer Banjo Cleary on the 26 April 2013 to suspected mitochondrial disease. He was just shy of turning eight months.
Archer stopped growing in utero and was delivered last September, six weeks premature weighing in at only 1.6kg. It was a proud moment for us when he hit his milestone of two kilograms and after six weeks of incubators and tube feeds (with added calories), our little boy came home from the SJOG neo-natal unit on the 19 October (which was coincidentally his actual due date) a hefty 2.3 kg! Our homecoming was bittersweet as we had learned only an hour before that Archer had failed his newborn screening test and it was later confirmed that he was profoundly deaf in both ears. We accepted that (we could handle deafness!) but we also took Archer home knowing that things were not quite right with his liver. Blood tests had shown elevated protein levels, however over the weeks that followed, these seemed to normalise and we were told that there was no explanation, and it was put down to him being born prematurely, and his body still trying to catch up.
Life went on and we had baby hearing aids fitted, and we were looking into the probability of cochlear implants around Archer’s first birthday. Although a little colicky he fed well and seemed to be gaining weight and was well ahead of his age in terms of developmental milestones. I was sure that unlike his six year old brother, this kid was going to be an early crawler and walker and would probably be turning me grey by being a climber. Sadly, that was not going to be.
In January of this year  we had a follow up appointment with the gastro department of the
children’s hospital here in Perth and the doctors were very happy with Archer’s progress, telling me that he seemed to have surpassed the blip on the radar and they didn’t need to see him again for six months. But in February, we had our six month paediatrician appointment (which I wasn’t going to go to, thinking, well, we had just been to the children’s hospital and things were looking good) and we found that Archer had not put on any weight in those previous six weeks – what was going on, that could not possibly be right. Thinking it was probably an error with the scales, we were sent home to start baby Archer on solid feeds, which I believed he was far too little for, but did as the doctor instructed. Two weeks passed and I visited our GP for another ‘weigh-in’, only to be devastated with the news that not only hadn’t Archer put on any weight with his increased feeds, but he had in fact lost more weight. Feeds were further increased to two solid meals a day and increased bottle feeds; and the next week was the same, more weight loss. We were instructed to take Archer directly to the ER at the Children’s Hospital.
We remained in Princess Margaret Hospital for Children for three harrowing weeks over Easter while specialist after specialist drew blood, took urine, took liver, skin and muscle biopsies – our little man, still smiling bravely, was subjected to constant painful tests which broke our hearts, but we knew finally we would get some answers to make our little guy well. Knowing the previous problems with his liver, I had accepted the fact that we may have to face the possibility of Archer needing a liver transplant.
One doctor, Dr Shanti, told us that she believed Archer may have a condition known as mitochondrial disease. What is that??? She gave us some literature which at the time seemed so remote for our still smiling, relatively healthy little boy. Our gastro team were not convinced and we persevered with increased feeds now with the aid of a nasal gastro (NG) tube – and gradually Archer began to gain weight and become stronger once again.
When he finally hit the four kg mark we were ecstatic and at a whopping 4.17 kg (his heaviest weight so far) we were discharged from hospital (along with the pump to continue with his nasal gastro feeds at home). We felt safer at home, away from the bugs and germs found in hospitals and we saw our baby once again begin to thrive, begin rolling over, holding onto objects, chatting away and start to push himself up with his arms. He was healthy, constantly happy and loved life!
On Wednesday 24 April, while putting Archer down onto his play mat for some tummy time, I accidently hooked his nasal gastric tube pulling it out, so we went back to the hospital to have it reinserted. The main photograph at the top of this story was taken in the car park of the hospital; Archer looking very happy that the tube was gone (albeit temporarily). I texted this picture through to my husband to show him what a naughty mummy I was (pulling it out, after constantly telling everyone else to be so careful!!). This was to be the last photograph taken of baby Archer.
With new NG tube in, I was itching to see how well Archer was going and could not wait until the following Monday for our appointment with the gastro team. Well, we were high fiving everyone when the scales showed Archer was now 4.6 kg. He had gained a massive 430 grams and had added nearly four centimetres to his length in only nine days!!!). I was totally convinced Dr Shanti had her suspicions wrong (we were still waiting on results from the biopsies that we were told would be between two to three months!). This was not a child who was digressing, he had plenty of energy (he was so very squirmy) and I was sure the problems were more than likely related to his feeding (I obviously was not feeding him enough earlier).
How wrong I was…
The next day we celebrated ANZAC day. I decided to keep Archer home from the Dawn Service as I didn’t want to subject him unnecessarily to the general public with their pre-wintery colds and flus. Archer ate his breakfast, his appetite growing so that he was now easily consuming a whole bowl of baby cereal, and he played happily waiting for his big brother and dad to get home from the service. He sat with his dad having his tube feed watching the football on TV – life was perfect. In fact, I was actually emailing a friend in the US who was doing a story on ANZAC day and who had asked how little Archer was getting on. I told him he was fantastic and that I was sure the doctors were wrong with their suspicions, and he said to me that he could see Archer at 15 looking back at this time wondering what all the fuss was about as he led an active teenage life. I totally agreed with him.
Only an hour later I prepared Archer’s lunch of pureed mixed veggies. He had a bit of a sweet tooth so many of these savoury meals had a spoonful of apple puree in them just to get Archer excited about his meals. Archer only had a few mouthfuls before he pursed his lips and rejected lunch, which he had never done before. Perhaps his throat was a bit sore, as he sounded a little hoarse and we had put that down to the new NG tube which had gone in the day before. He was a little clammy and his temperature was about 35.8 degrees. He vomited for the first time in his life only moments into the tube feed, so I phoned the hospital who told me that it sounded like an irritation from the tube or he may have contracted a bit of a virus. I had read enough on mito to know the devastating effects a simple cold or virus could have and at this stage we still had no word back on whether this was an actual diagnosis for Archer), so we kept an eye on him as he slept for the next five hours while we kept him fed via the tube.
I went to bed early that night as I was still getting up every three hours to feed up our little man and my husband came to bed later telling me that Archer had woken up for his feed seemingly back to his normal smiley, cheeky self. Phew! But at 1am when I got him up for his feed Archer was whimpering a bit, and although he fed, he did not seem overly interested. Putting it down to the probability of still having a bit of a throat irritation from the new tube, I put him back to bed. As I kissed him goodnight, Archer was still a little clammy so I took his temperature – it was 34.9 degrees, which did not seem right. I put a blanket on him and waited another 20 minutes and again, his temperature was still 34 degrees. My husband woke to me on the phone to the hospital who suggested we bring him right in. I was questioning this, thinking but he seems perfectly fine in himself (he was not showing any other signs of illness – our other son was a lot sicker than this in his first six months with colds and things), but my husband convinced me that better to have him checked out ‘just in case’. We were in ER for about five hours, Archer under a heat lamp not unlike the one he had in the neonatal unit when he was born. In hindsight we had done a complete circle. He was rolling around, trying to catch the attention of his big brother, and we were told by the ER doctors that he seemed fine, probably just a mild virus and we could go home.
Call it a mother’s instinct but still with the mitochondrial disease info floating around in my head I asked if we could stay in hospital just for observation as I really wanted the team of specialists we had been seeing to just check him over, to be on the safe side. That was the best call I have ever made. By 7am we were in the hospital ward and Archer was sleeping. My husband and son went home for some much needed rest and I kept an eye on my still whimpering baby. He just was not right, but at the same time he did not seem overly ill. His temperature was fine and blood tests and blood pressure tests all showed things were good. I could see my baby getting more and more lethargic – which to me was so out of character, but to anyone else would seem like a child fighting a simple cold. Because of his history, it was decided to take a lumbar puncture test to test for meningitis, as well as add to the tests being conducted into mitochondrial disease. I remember phoning my mum to tell her we were back in hospital and saying that Archer seemed really sick and I was a bit scared. At this point my husband and I had not told any of our friends or family about the tests for mito.
His team of gastro doctors came in as soon as they had heard of our admission and I cried, telling them that he seemed very sick and I was getting frightened Dr Shanti was right in her suspicions. One doctor went off to find Archer who was having the lumbar puncture test and she brought him back to me – he was a grey coloured rag doll. I cried and cried – I knew then; this was what I had read on various mito blogs. He was dying. I think at that point Archer’s gastro doctors were also thinking the same thing, as much as they all wanted Dr Shanti to be wrong, maybe she had been in fact correct. The next couple of hours were a blur. They injected Archer with antibiotics for the virus they thought he had and he seemed to regain some colour, opened his little eyes and started fighting the nurses away when they tried taking his temperature. I was feeling much better, Archer was coming good! He was moved to Intensive Care which I thought was just precautionary. However, from the moment he was settled in the ICU room, his condition began to deteriorate. He was slowing down, and an ECG scan showed that his little heart which had been perfectly healthy only hours before was beginning to fail. No!!!!
By 4pm, with a tube down his throat to assist his breathing, and save his precious energy, and a multitude of syringes hooked up to him administering various drugs into his little body, we were advised to contact our family. Up till now we had not alerted anyone into the potential seriousness of his condition (we had been hopeful that the tests would come back negative, and we didn’t want to unnecessarily worry our family, but wanted life to go on as normal). My husband’s family got onto the first available flight across to Perth from Melbourne and my family in Perth rushed to Archer’s side. My little boy, Jackson was brought in to see his baby brother hooked up to all the machines – it was all very surreal for him, and he was too young to know of the seriousness of it all. The fabulous nurse in ICU explained to him that baby Archer was very sick and they were all trying to make him feel better.
Archer scared us all with an irregular heart function, and my heart stood still as the doctors and nurses stabilised him. I knew this was coming to the end. Having read so much on mitochondrial disease, I now knew this was what we were facing, and Dr Shanti had been right all along. Baby Archer’s body was beginning to shut down. I also knew that if Archer survived this ordeal, his quality of life was going to be bad, very bad. He hung on and I told him I loved him, but I didn’t want him to suffer so instructed him to go to his great-nanna who had passed away only weeks before Archer’s birth. I didn’t want to see him suffer, so I was prepared to say goodbye. He continued to hang on.
I was confronted with my baby, on his back on the very large hospital bed, with no covers on him being resuscitated. To this day I continue to have this picture in my head of the doctor pushing down so very hard on my baby’s chest trying to restart his heart. I yelled at them to stop, telling Archer to go on peacefully, somewhere over the rainbow (by this stage all faith I had, was gone; there was no God in my opinion). But the staff just continued to try to revive our brave little boy, which I knew ethically they had to do, as painful as it was to witness. By 11:45pm a mere 14 hours after he first became unwell, they decided nothing more could be done and everyone was cleared from the room so that Dave and I could hold Archer while he passed away. He was still warm and looked as though he was simply asleep in my arms, as he had done so, so many times before. But I took comfort in the knowledge that this was the best for him, and the best for our family. Mito would have had a devastating effect on Archer, but also on my family and in particular on our six year old Jackson. He adored his baby brother, who he had waited so long to have; a brother who he knew was deaf and who was going to have a struggle in front of him, but his big brother protection could not save Archer now. Archer left us on the 26 April, just short of his eight month milestone, surrounded by his loving family.
On Friday 3 May we held a Celebration Day for baby Archer, all 130 guests wearing red. We set off 200 red balloons in his honour into the clearest of blue skies. The day was a perfect tribute. Everyone received a “Car Teddy”, a replica of Archer’s constant companion; a tag attached with the website link through to the Mito Foundation for donations.
We as a family are now dedicated to help raise awareness about mitochondrial disease, and in conjunction with the WA branch of the Mito Foundation, will continue to raise funds to aid in the ongoing research, education and support so desperately needed in Western Australia.
We hope that one day no family will not lose their child to this horrible disease as we did over a year ago.
13th May 2013