Finding out I was pregnant in May 2018 was a dream come true, to find out it was twins a week later we were both in shock but excited at the same time. The Pregnancy went well apart from a shortened cervix which required the cervical stitch. Then at 27 weeks on the 25th October 2018 I went into ore term labour and the boys decided it was time to come and meet the grandparents who had arrived the day before from the UK for a 3 week holiday, and ended up staying for 4 months.
At 27 weeks Kiran was born in his sack by emergency caesarean at 2.46pm on 25th October 2018. He weighed just 800 grams. 2 minutes earlier his twin brother Jayson had been born at 1080g. Kiran had a hard time while in NICU, staying on CPAP for longer that his brother, having an infection that pushed us back into level 3 and not putting on weight as quickly as they required him to. He also had a few gut issues, with blood in his stools I was told that the reason for his gut issues was a dairy intolerance. I eliminated dairy from my diet as I was determined that I wanted to give him the best start I could, and he would have my breast milk.
After 3 months of amazing care in NICU, it was time to bring the boys home. Jayson came home 2 weeks before Kiran. Kiran was not quite ready to come home, as he was slow in learning how to suck his milk. He got tired easily and was not taking a whole bottle. But they removed his feeding tube and allowed us to take him home on the 24th January 2019. Kiran came home at 2 corrected days old, 2 days after his original due date.
At 6 days corrected we had our first check up outside of hospital with the baby health nurse. Kiran now weighed 2150g a massive difference from when he was born but still very small. His gut problems were a lot better without dairy in my milk, but he was still having more dirty nappies than were expected for a baby on breastmilk, so it was recommended to me that I also cut out soy from my diet too, this did help reduce those dirty nappies but his weight was still an issue.
For 3 months, we saw the health nurse along with our paediatrician and all seemed well, they were concerned about Kiran due to him being small and his slow weight gain. But at that point, no one knew to what extent his issues ran.
In April 2019, our paediatrician recommended that we put in a feeding tube, this was our first hospital stay after leaving NICU. It was around this time that it was also suggested that Kiran should be on formula. I was adamant that he would have my milk so I would be giving him the best start I could, so agreed that I would still continue to give him my milk by pumping milk for him and then add a scoop of formula as a calorie booster. As he was dairy and soy intolerant he was given Neocate.
Due to the feeding tube, we became regular visitors at the hospital. Kiran was a good boy and rarely pulled it out himself (apart from in NICU when he broke the record by pulling it out 5 times in 24 hours!), it was more due to his brother Jayson that it came out! At first, we used to do bolus feeds as the feeds were still very small. We used a 60ml syringe and did gravity feeds. However they used to take 30 – 45 mins, we found that if we did them any faster, he would vomit either mid feed or straight afterwards.
To begin with, we were not convinced about the pump to feed him with, but by the end we were so grateful for the pump and wish we had started him with the pump earlier. But we were happy to hold him and have cuddles, and of course Jayson wanted in on the action and have cuddles too so I found myself happily trapped at times!
Due to the feeding tube, we started to see a dietitian that advised on how much feed we should be giving Kiran we eventually got to 97ml per feed, which was a slow road to get there as we couldn’t go up more than 1ml every few days and then once we had added 5ml had to leave it at that for a few weeks for him to get used to it. If we went up too quickly or ran the feed too fast, he would vomit the feed straight afterwards. Once we started using the pump, we started to give him overnight feeds that lasted 8 hours and were changed after 4 hours, although that wasn’t the only time I woke up overnight as Kiran would move himself around the cot doing a full 180 and end up facing the other way, and on occasion would even go 270 before getting his feet stuck in the bars on his cot!
We were regular visitors to the paediatrician and the eye clinic too. In June 2019 on a trip to the eye clinic Kiran was diagnosed with cataracts. He was then booked in to have an operation to remove the cataracts as a result the ophthalmologist removed his lenses. He had two operations as he was so small, they operated on one eye each time. Each of these operations involved a nights stay in hospital. Then he had to have 3 lots of eye drops multiple times a day. He was a very brave boy, although he doesn’t look too happy in this photo!
In the middle of having the surgeries he also contracted bronchiolitis. The GP told me it wasn’t anything wrong with him and his breathing was normal but did prescribed antibiotics for him. Mum's intuition told me that something was wrong. After a couple of days of antibiotics, he was not getting any better. So we took him to the emergency department at the hospital. They did an x-ray to make sure the tube was in the right place, but also to look at his lungs and saw that he had bronchiolitis. He was better by the time he had his 2nd eye operated on a week later.
I’m not sure when the breath holding started, but it became part of Kiran, for us it was just something that he did. At first, they were not too bad and he usually came out of it after 10 -15 seconds or so, however to us that sometimes felt like a lot longer. In the last year I cannot remember him crying as he used to hold his breath rather than cry. Mainly if he was startled awake, didn’t like something, if he didn’t want to do something or he wasn’t happy. I used to be able to pick up on his cues and on occasion was able to prevent the breath hold. In general, he was always a very happy baby and always smiling! Or looking at his brother like he was crazy!
It was hard watching Jayson developin, growing and leaving his brother behind. Jayson was rolling over and crawling, while Kiran could only lie there watching. We gave him tummy time, but he used to roll back over to his back we used to joke a lot that he did do tummy time but on Kiran’s terms! You could tell that Kiran wanted to do these things, but as we now know he never had the energy to do it. But he did enjoy watching his brother and we always made sure that we included him.
When we had our 6 month growth and development review, Kiran failed the tests and was told he had global developmental delay. It was suggested that he may have mild Cerebral Palsy, we were referred to Cerebral Palsy Alliance (CPA) and started to see them in August 2019. As anyone with twins knows, this didn’t just mean than Kiran got therapy it also meant that Jayson came along to play with the toys and show Kiran what to do.
They did the initial assessment and said that he didn’t have Cerebral Palsy, but they would be happy to support us with physio and speech therapy and later on they also provided Occupational Therapy.
After further eye appointments, Kiran was given contact lenses. They definitely made a difference to what he could see after having his cataracts and lenses removed. I feel that it was about this time that he started to smile a lot more, showing us that he was a happy little boy despite his difficulties.
In October 2019, we were referred to RIDBC (the Royal Institute for Deaf and Blind Children). They came to the house and provided Kiran with toys to attract his attention. He loved the flashing lights and musical sound toys, however there were some toys he didn’t like, such as the rain maker sound he used to hold his breath to let us know we needed to move on from that one.
For their first birthday, my parents came over from the UK to help us celebrate their first year, we also took them on their first holiday staying in Sussex inlet for a few days. We went to a couple of beaches and Kiran was fed by my mum and dad while Jayson, Ajay and I played in the water and on the beach. It was around this time that my milk dried up, so Kiran was now fully formula fed.
It turned out to be Kiran’s first and last holiday, as well as my dad's last holiday. He was diagnosed with pancreatic cancer in January 2020 and sadly passed away in March 2020.
We had many appointments with a variety of different people, paediatricians, neurologist, gastrologist, dietician, ophthalmologist and we were regulars at both Sydney Children’s hospital and also St Georges hospital.
We were referred to a Geneticist and the initial blood tests found nothing that was evident in Kiran. So it was decided that further genetic testing should be done that included taking blood from myself and Ajay. We had this done just before his MRI in February and then had a long wait for the results.
After seeing the neurologist for Kiran’s breath holding, she suggested that we change the iron supplement that he was having which did help with the vomiting as he didn’t throw it up as soon as he had it. She also requested an MRI.
Kiran had his first MRI in February 2020. That was a hard month for all of us. With Kiran being so small and holding his breath and not having an exact diagnosis it was advised that he shouldn’t fly long haul. As I mentioned before, my dad was diagnosed with pancreatic cancer that had spread to his liver and had been given 6-8 weeks. Kiran’s MRI was booked for the 11th Feb and I wanted to be here for that, 3 days later my dad suffered a stroke, and was in hospital. I flew back to the UK on the 17th Feb and took Jayson with me, making the very hard choice to leave Kiran behind with Ajay. It was extremely hard to separate the twins and leave one behind, but I knew he was in safe hands and that we could skype every day to see him. I remember skyping and seeing his face light up when he heard my voice or his brother rambling on. I have a beautiful video of that time that Ajay took - he wasn’t sleeping one night and Ajay asked Kiran why he wasn’t sleeping his answer really sounded like “mum's not here” and then at the end it sounds like “goodnight”. I love that video.
While we were in the UK, the results from the MRI came through. Kiran had low white brain matter and was given the preliminary diagnosis of hypomyelination, but needed to have a second MRI at a later date to confirm this.
Sadly, my dad passed away when Jayson and I were travelling back to Australia. I flew back to the UK a couple of weeks later for 3 days. But a total of 7 days away leaving Ajay with both the boys that was hard. Especially with the uncertain time of the beginning of the COVID pandemic. Thankfully I managed to get back into the country 3 days before the mandatory hotel quarantine came in and quarantined for 2 weeks at home with my boys, spending lots of time in the garden with them.
During the beginning of the COVID 19 pandemic, we continued with the support from CPA and RIDBC, but we had to have online sessions for these. Kiran found these hard to do and would only last 30 minutes before it became too much for him, as the screen was not something he could focus on easily. He became frustrated that he couldn’t reach out and touch the toys that he was hearing and being shown on the screen. For some of the sessions, I had a variety of toys next to me or asked Jayson to assist and bring toys to Kiran and showed him the toys we had and let him play with those. These sessions were more like a catch up to make sure everything was going okay rather than an actual session that we had become used to.
Through the amazing NDIS, we were able to order Kiran a special tomato chair that he was able to use. The chair he loved and became a favourite to sit in as it supported him more than the highchair and he didn’t have to use all his energy trying to sit up. He used to love sitting in there for his video therapy sessions as well as meal or story time.
We were also lucky enough to be able to get him a standing frame this allowed him to stand while interacting with his brother rather than always sitting or lying down. We were building up to having Kiran in the standing frame more, but he used to get tired in it easily. Unfortunately, I think he only used it a total of 3 maybe 4 times.
Our Life became a routine that was based around Kiran’s feeds, Fruit puree for breakfast, a midday milk feed, a 3pm feed, pureed veg and meat for dinner, washing the bottles, showers and 8/9pm bedtime feed then an overnight feed.
Kiran didn’t like being left to feed on his own, so I spent a lot of time sitting on the sofa with him while he fed. Quite a few times I would put the boys in the pram and go for a walk to the shops or to the park for the 3 pm feed. Kiran was fine with this, Jayson was right next to him often leaning over to look at Kiran! They used to take turns in who would kick off their blanket and a few time I would have to retrace my steps to fond it. Luckily, I managed to fin it every time.
When we used to go to the park and to the playground, I found it heartbreaking that Kiran couldn’t participate. Most of the time he was a happy little boy and played with his toys that he used to chew on while Jayson played on the swings and the slide. I did give Kiran a go on the swing and Jayson pushed him but he was too interested in trying to see his brother!!
On a few occasions, I stopped his feed and took him out of the pram so he could go down the slide. I never managed to get a photo of this as I was usually on my own with the boys. I remember the first time I did it, I got some strange looks from people and even got asked what was wrong with him. At that stage we didn’t know anything, so I used to say "nothing, he’s just small and that the tube is how he has his food as he doesn’t eat the same way as we do".
Jayson used to get quite protective over Kiran and when some of the other children gathered round the pram to look at Kiran. Jayson used to pull them away as if to say he’s my brother and don’t crowd him.
He had his 2nd MRI in August 2020, and it came back that the white brain matter myelin had increased slightly. To me, this was a huge relief but there was still something else that was wrong. We were now awaiting the genetic testing results to come back to see if there were any abnormalities.
Just before their second birthday, we got the results. Kiran was diagnosed with an extremely rare chromosome disorder called MIPEP that sits on Chromosome 13. The MIPEP effected the mitochondria of every cell in his small body. This meant that he didn’t produce energy as he should and therefore didn’t have the energy to grow like a normal person, as most of the energy that he produces went into developing his brain and his breathing. Something that most people take for granted every day. He was 5th in the world to have this condition, the study had been done in 2016 and out of the previous 4. 3 of them have not made it past their 1st birthday. The 4th was 4 years old at the time of the study. All the children in the study had heart conditions too, something that Kiran did not have, so that gave us hope. But it became all too apparent that the condition he had would be life limiting.
For the boys 2nd birthday, we had their friend Jess and her family over for a BBQ. Jess was born at 28 weeks a month after the boys, so we spent 2 months together in the NICU. We made sure that the day was special for the boys, we gave Kiran a special toy, a peek-a-boo Elmo that could be connected to a button that he could press to make it work rather than pressing the foot. I took a video of Jayson helping him open it and then when Ajay pressed Elmo’s foot Kirans face lit up. It was such a special moment. It was on this Day that Kiran also received his first kiss from a girl, and Jess was that lucky girl to kiss him!
On the 26th October, Kiran had a EEG done to see if his breath holding was linked to seizures or not. When we got there to have the test done, I was told to keep him as still as possible and to not be too happy and not to let him get upset or distressed, I found this to be odd as it is when he was upset or distressed that he holds his breath and that is what the neurologist wanted to be documented. In fact, this day he was very happy and was smiling at his new head gear!
Kiran idolised his brother and loved it even when Jayson was sitting on top of him, or playing with him. He spent a lot of time watching him and I felt so bad as I could see he wanted to be doing what Jayson was doing, riding on the car, walking/ running around or playing outside with the ball. We used to try to help him do these things, Jayson helped too of course, showing Kiran all his toys and showing him what to do.
Kiran wanted to walk and when you held him up he stood on his feet and tried to take a few steps. But didn’t have the strength in his legs to stand for very long before he took his feet up and relied on us to hold on to him. For everything he wasn’t able to do he always admired his brother doing them and smiled at everything.
On Thursday 26th November 2020, we were supposed to go to CPA for an appointment. I thought Kiran felt a bit hot, but of course couldn’t find the thermometer to check. We turned up only to find out that it had been cancelled and we had not been informed (luckily we live only a 5 minutes walk away, so it wasn’t too much out of our way). At that point they were taking temperatures before the appointments so we had our temps taken Kiran’s temp was high it was 38.7. So I was off to the chemist to buy another thermometer so I could track his temp.
I gave him Panadol and then kept an eye on his temperature for the rest of the day, a dose of Nuerofen and another of Panadol. And it was still going up, it got to 39.5 and he was starting to get really lethargic and a little unresponsive. I rang an ambulance. While we were waiting for the ambulance to arrive, his temp went to 40.5. When the ambulance arrived, they stripped him of his thin sleeveless and legless onesie and his temp was still climbing, they took us to St George hospital with ice packs round him he still managed to get his temp to a dangerous 41.7 while in the ambulance.
When we arrived at the emergency department, we were met with an assembly of nurses and doctors. They wanted to take blood and also set Kiran up on an IV drip as he was dehydrated. They had a very hard time getting in a canular, I think about 5 people tried in his tiny little arms and legs and decided that they would have to drill into bone to be able to do it.
They tried in his leg first but were unable to get it in so the nurse in charge eventually managed to put one in. Unfortunately, it had to put it in his skull. I was gutted that they had to do this, not only it was terrifying that it had gone into his head, but they had to shave some of his beautiful hair (before this he had never had it cut). He had the IV put into his left temple.
Once his bloods came back, it turned out he had very high sodium levels. He was put on a drip to try and slowly flush out some of the sodium, his temp started to come down too. The docs were talking to Sydney Children’s hospital to see if we would stay and St George, or if we were to be transferred to the Children’s hospital in Randwick. It was decided that we would be transferred.
Of course, this not being our first hospital stay, or unexpected hospital visit to emergency (we had brought him in a couple of times as it was just easier to go to hospital with Kiran rather that to the GP). They had kept us in overnight for observation I had come prepared to stay with him with several changes of clothes for Kiran, one for me and all of his feeding equipment, formula, feeding pump and bottles.
Before we could be transported to the Children’s hospital, Kiran had to have a rapid Covid test. Thankfully they took the test from up his nose, he had a shallow gag reflex and if they had tried to take anything from his throat he would most likely have thrown up.
We were transported to the hospital and went to the PICU (Paediatric Intensive Care Unit) ward. We were put into an isolation room to begin with as they weren’t sure what was wrong with him that could be causing the high sodium levels. Kiran had one nurse assigned to just him, so that they could monitor him closely. They monitored his stats and took his blood to continue to check the sodium levels, which slowly began to decline, but the doctors didn’t want to bring it down too quickly.
Kiran threw up during the night and he actually threw up faeces, it smelt very bad. The nurses put in a second NG tube so that they could drain his stomach of the fluids. When the doctors came to do their rounds, they ruled out a twisted bowl and said that he was just very backed up. Kiran was given laxatives to loosen everything and it was great when he eventually did a huge poo! They ran further blood tests and grew cultures that didn’t show anything but they were going to grow them for longer to see if anything showed up (it didn’t).
The next day, Kiran’s temp began to reduce and he was being a very chatty little boy, I’m sure that he was trying to tell his nurse his life story! We couldn’t get a word in edgeways! I knew he was in good hands, so I went to grab some lunch and also to buy him a toy! As organised as I thought I was I forgot to pack any toys for him!! The chew rattle that I got for him soon became one of his favourites, along with his all time favourite octopuses that had been given to us in NICU unit and that a close friend in the UK had made and sent the boys.
While he was in hospital, they changed his canula and took his bloods regularly. Although it was a job that they tried to avoid doing if they could as Kiran held his breath when they did and went stiff it made it hard to find a vein and his breath holding had gotten worse. Since we had been in hospital, his episodes as we referred to them, became longer and with the monitors on it was scary for me to see the numbers. His heart rate dropped very low, and his oxygen levels dropped too. A lot of the time, I kept calm on the outside, even though my heart was racing as we managed to coaxed Kiran out of his breath holds. The doctors were worried about the breath holds and I explained that we were due to have another EEG and ECG and Heart Ultrasound. They set up these while we were in the hospital, which made sense as they were able to monitor it over a longer period of time rather than a limited hour session.
During the EEG, Kiran was monitored for 24 hours. They set up a video camera so that they could also see what he was doing during the EEG readings. It showed that the breath holding episodes were not related to seizures which was a huge relief, but it still didn’t explain why he was doing them, we may never know now.
The EEG and ultrasound on his heart showed that his heart was normal which was also a relief. The other 4 children that had the Genetic condition MIPEP had also had heart defects.
We got transferred onto one of the other wards in the Children’s hospital as a stepping stone to go home. We didn’t last more than a few hours and he had 5 breath holds in that time, as I have said before they had become worse and that was too many for the ward to cope with, one of those they called a code blue.
When the code blue was called, the team of doctors from the PICU ward came running and they told me as soon as the alarm sounded, they knew it was Kiran. They decided that the ward wasn’t the right place for Kiran as the nursing staff on the ward were not comfortable or equipped to deal with the sever breath holding and they would call on the doctors again and again overnight. So it was decided that we would be transferred back to the ICU for a night. There was no reason for us to be in the ICU ward as Kiran’s sodium levels had returned to normal. We were in limbo, the ward wouldn’t take us back due to his breath holding and we were taking up a valuable bed for somebody else that might need it more in the ICU, but they didn’t want to discharge us straight from ICU.
We had a meeting with the doctors and nurses from ICU, the geneticist, neurology team, the family counsellor and I’m sure a few others too as well as our paediatrician who dialled in to the meeting, to discuss the next steps for Kiran. It was a hard meeting as we were told that he was going through some changes and that the condition he had was life limiting, but nobody could really tell us how long he would have left. It was then suggested that we should be transferred to the Children’s ward at St George Hospital, which is closer to home for us and the staff there knew us well from our many frequent visits to the ward for Kiran’s tube changes and were also used to him holding his breath during the changes.
We transferred to St George in the afternoon and were welcomed by the staff. We were put into a 4-bed room opposite the nurse’s desk so they could keep an eye on Kiran and also so they were not too far way from him. Our Paediatrician also worked at the hospital but was not on duty that day. In fact she was due to go on maternity leave. But she made a special detour on her way home to come and see Kiran and make him her final patient before she went on leave. And also add to the extensive hand over that would be required for Kiran.
We were told about palliative care for Kiran and given the option that we could remain in hospital for however long he would be with us. Or, they could give us a gate way pass and we could take him home see how we went and bring him back straight to the ward if we wereconcerned. I knew that he would be much happier at home with his brother and we could all be together rather than having one of us always at the hospital with him as there is no way we would have left him there on his own. We decided that day 5th December that we would be taking him home and we would, if we needed to, go back but we wanted him to be at home. As soon as we got home, he instantly became more relaxed and was very happy to see his brother again as was Jayson to see Kiran and all the toys Kiran had been given while in hospital.
We were told about the amazing facility Bear Cottage too, and were given a referral to the centre to hopefully be able to go there as a family and leave Kiran in the very capable hands of the nurses while we had some respite. On the 9th December, we went for a visit to the centre and it was amazing, we were looking forward to being able to go and spend some time there. They were fully booked for the rest of the year, so we were planning on going in the new year. We made a day of it any went to Shelly Beach for Kiran’s next feed and for Ajay and Jayson to have a swim.
The next day, I had an email from Bear Cottage to say that they had an in-length discussion with our paediatrician and that they had discussed Kiran and he meets the requirements to be a patient there. They also told us that if we require emergency respite to let them know and they would do everything they could to accommodate us. Unfortunately, they were unable to accommodate any family due to Covid and had to send many people home due to not being able to have people in the centre.
Kiran was much happier being at home and showed us that by claiming half of the sofa for his naps!
We carried on with our appointments and going to the park a lot and to the beach a few times too - trying to give Kiran the experience of being a normal little boy. Of course he couldn’t run around like Jayson or go on the slide without help, but we did the best we could. We put up the Christmas tree that Jayson helped decorate with all of his and Kirans shoes. Kiran loved watching the flashing lights of the Christmas tree and we had it on as much as possible for him to watch.
Everything was going okay. Although his breath holding was a lot worse than it had been and very scary at times, with gentle coaxing and rubbing of his front and back, he would eventually breath normally again.
On Sunday 20th December 2020 my worst nightmare came true. I heard the pump alarm go off to indicate that Kiran had finished his feed. In a half awake state I got up and turned the pump off and went downstairs to get his next feed. Something niggled at me that something wasn’t quite right and I went back upstairs and found him stone cold and no longer breathing. My little baby was no longer with us. We are devastated.
Good night and good bye Kiran we love you always my darling child.
Kiran Meeraiya, 25th October 2018 to 20th December 2020