Charlie's Story

Guest blog post.

My name is Eloise Thomas and I live in Perth WA. My ex husband and I found out that we were expecting our first baby in November 2007, just after our first wedding anniversary. We were absolutely thrilled and excitedly anticipated his due date of the 27th July. Throughout my pregnancy I had early pre-eclampsia, very high blood pressure and polyhydramnios. I was hospitalised for the final four weeks of the pregnancy on and off and had two amnio-reductions as I was producing way too much amniotic fluid and there was a chance that bub was having a “blockage of some sort”. We were told that “something was wrong”, but no one could figure out exactly what was wrong because the ultrasounds were showing a healthy baby who was growing well and not showing any signs of distress. I had a CTG every day for the final fortnight and bub wasn’t reaching the levels that were required, so I was booked in to be induced a week later on a Thursday.

Charles William Thomas (Charlie) was born just before 6am that morning by emergency c-section. My waters broke naturally at 2am and there was so much amniotic fluid, I felt like my organs were falling out. It was frightening to see that much fluid coming out of oneself (too much information, sorry). I think I even apologised to the midwives, who found that rather amusing as “it is what we do everyday” was their answer. I will never forget seeing our beautiful tiny little boy for the first time. He was brought up to my face so that I could see him and rub cheeks with him, but before I knew it he was rushed out of the room and the rest is rather foggy.

My ex-husband was absolutely amazing and went through so much while I was ‘fuzzy’ from the epidural and all of the other medication that I was on. All I remember from that day is being wheeled into recovery and immediately calling my parents and sister to share the news and to SMS every other person in my phone to tell them our joyous news. I had no idea what was ahead. I remember waking up a few hours later in my private hospital room when Charlie was brought in. He was attached to all sorts of different tubes, was lying on his stomach and inside a huge humidi-crib. He had at least five people around him, two of whom were Doctor’s, and they were rushing him straight to Princess Margaret Hospital where he required emergency surgery. I found out later that this was my opportunity to say ‘goodbye’ to him if the surgery was not to be successful. I don’t remember much of this, only what my ex-husband told me.

I have never been a Mum before and didn’t know what ‘normally’ happened after you have a baby.....did your baby stay with you? I’m sure that is what happened. Are all babies taken away for a while? I did know that something wasn’t right from the beginning but everyone was keeping me informed on a ‘need to know’ basis, rather than provided me with all of the information that perhaps I wasn’t ready to receive right there and then.

Charlie born full term with Tracheo Oesophageal Fistula (TOF)

Charlie born full term with Tracheo Oesophageal Fistula (TOF)

Our Charlie was born a TOF baby. He has Tracheo Oesophageal Fistula, where his trachea and oesophagus were joined and leading to his lungs, so he had no tube going to his stomach and he could not swallow (this explained the excess amniotic fluid) and he had breathing difficulties. My little angel was rushed to the children’s hospital only a few hours after he was born. I saw him four days later. He was kept in the Neonatal Intensive Care Unit at PMH for his first ten days and we will never forget that time. A frightening time where we had no one there to support us and let us know that yes, our journey was a difficult one and that it was normal for us to be feeling like we were drowning and so completely helpless. It was a very lonely feeling for the both of us.

Charlie was tube fed for the first ten days of his life, so feeding was a huge obstacle that took a long time and getting him used to bottle feeding was a huge challenge. Breast feeding was too distressing for the both of us, so after much painful deliberation, I chose to put him on formula. He also had severe reflux, so required a thickened feed.  I begged my OB to discharge me from the hospital ASAP and we went to live in the parents quarters at the NICU to be close to our boy. I was called into the NICU every three hours to feed him, express my milk and then return to the parents wing to catch up on some sleep, all while in agony due to getting an infection in my caesarian scar. My body didn’t respond well to anything at this time. Every day I could watch him, touch him but could not hold him. He had so many tubes attached to him, it took one of the NICU nurses about 20 minutes just to change his nappy. He was so small and sickly looking. It was very surreal.

After 6 days his wires were slowly coming off, we were trying to establish feeding and we were able to hold him for the first time. What an occasion that was. One that I will never forget. After the 10th day, Charlie was transferred back to the original hospital where I had him (SJOG Subiaco) where he remained in the Special Care Nursery under close watch until we could establish feeding. I hired the Mothercraft room, right across from the SCN where I learned how to look after him and feed him, under the close watch and assistance of the amazing staff there. And after three weeks, we were allowed to go home.

From when we got home to when Charlie was five months old, we nearly lost him nine times due to ‘death spells’ where his trachea would collapse (due to feeding/crying and the normal things babies do). I was too afraid to put him for sleeps in his bassinet, so he would sleep on my chest during the day and we had him attached to a monitor for him to sleep in our room during the night. We couldn’t let him cry, otherwise he’d get distressed and have an ‘episode’ where he would struggle for breath and go blue. We had him attached to the heart monitor then at all times and had oxygen tanks on standby in case he required some help. We had eight hospital stays in this time, so that his medical team could monitor him. I couldn’t count the number of doctors, nurses, specialists etc that we saw and each was equally surprised when they saw his hospital ‘portfolio’ because it seemed to always be the thickest in the pile for a child so young. 

Charlie was put onto reflux medication and his feeds were thickened more, which helped a lot. He had regular appointments every month so that his medical team could keep a close eye on him and we still have yearly appointments with his team and he turns 6 next month. He has had appointments for surgical, neonatal general, monitoring, speech pathology, audiology, palette (he has a sub mucus cleft palate and a double uvula), physiotherapist and respiratory. He only had two dilatations (incredibly fortunate for a TOF kid), where they insert a rubber knitting-needle type object, dipped in oil and put down his throat right down into his tummy to ensure that the oesophagus remains stretched and open, to prevent any obstructions to add to his swallowing difficulties.

IMG_3555.jpg

He wasn’t able to eat normal foods for a long time as his oesophagus was not as ‘coordinated’ as it should be, so he was on mashed up food for a long time and I may have done a happy dance in Coles when he was able to eat his first Milk Arrowroot bicky at 2 without choking. And we have been on a steady road ever since. His last episode was two years ago and Charlie is now a robust, strong and fast growing little boy who turns 6 next month. He has had no other health issues, is eating me out of house and home and loves school. After such a rough start, he has really shown us how amazing he is and we are so incredibly proud of him.


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Twins!

Guest post by Katrina B.

All together in the nursery, the day they came home.

All together in the nursery, the day they came home.

'Oh, I didn't see this coming...'
Those were the words from the sonographer that my husband and I will never forget at our first ultrasound viewing, which displayed two tiny hearts beating away. It was the biggest and best surprise of our life - we were expecting twins! 

As beyond exciting as this news was, it also brought with it a sense of concern too, as we were immediately told that as I was pregnant with multiple foetus, it was a high risk pregnancy, as not only would my body be carrying the pressure of two babies at once, it also brought an increased risk of pregnancy conditions to the table, as it put extra stress on my organs, for which I was checked every two weeks at King Edward Memorial Hospital, where they specialise in high risk pregnancies. Being identical twins, I was also having ultra sounds every two weeks (that part I loved - being able to see my babies so frequently!) as well, to ensure I wasn't developing Twin to Twin Transfusion Syndrome, where identical twins can receive too much or too little of nutrients, as they share the placenta.
Both of my boys were developing extremely well and my doctors even thought I'd make it between 36 weeks to full term with them and I was really beginning to see the picture in my head of sitting there in a hospital bed, cradling both babies at once - I couldn't wait to have my arms full of love.

At one of my usual appointments, I knew something was up as soon as I saw the look on my doctors face after looking at my routine results, and after half a day of many tests, I was told I had developed a pregnancy condition called pre-eclampsia, that my organs were starting to shut down, that my babies would arrive in anywhere from a few days to a month, so I was given a shot of steroids to help their lungs start developing sooner and told that a hospital bed on the ward was currently being prepared, where I'd stay until my babies arrived. I still really had no idea what was going on, it was a lot to process, I had nothing with me, nothing packed and was thinking of everything I now had to cancel (logic went out the window when the confusion came in!), including the baby shower my sister had organised for the next week. 

My husband and mother were amazing and brought me what I thought I'd need for the night and arranged to bring the rest the next day and got me settled into the hospital room, with my husband staying with me until late, as I tried to process the whirlwind that was that day. The next thing I knew I was woken in the early hours of the morning to my waters breaking where shocked nurses and doctors realised these babies were coming fast and that there was no time to give a second shot of steroids to help with their development. Two and a half hours after my waters broke, my beautiful tiny babies had arrived via a natural birth at 30 weeks, with doctors allowing me a swift kiss before they were taken to the NICU. The rest of the day was a blur, as I was taken to theatre to have excess placenta removed, then to to the Adult Special Care Unit (ASCU), as I was still in a bad state from the preeclampsia, where all I remember is begging to see my babies through states of being 'out of it'. 12 hours later, my husband, who had been shuffling between the NICU and being by my side with my mother all day, was allowed to wheel me down with my oxygen on, accompanied by nurses. It felt so odd being wheeled up to a box and being told that was your baby was inside there, hooked up to all sorts of wires and contraptions, then off to another section to do the same with your other child. I remember being worried that being separated after living in each other's space for so long, that this would cause extra stress on their tiny bodies. 

Just before the boys were ready to come home, that magic first 'double cuddle'.

Just before the boys were ready to come home, that magic first 'double cuddle'.

After several days, I grew strong enough to leave ASCU, then to the maternity ward and after a week in hospital in total, was allowed to go home, where I remember feeling so strange and extremely empty as I walked into our home, where just one week ago I had left with a belly full of babies, expecting to be home in a couple of hours, to coming home a week later empty handed for a while. Everyday I would travel to the hospital to be by my boys' side to encourage their strength, let them know it was going to be ok because mummy was there when she could be and to be there for the light care taking duties the NICU team would allow us to do, which made me feel like a 'real' mum. I was fortunate enough that the boys were just around the corner from each other, so I never felt too far away from either baby, but when one of my twin's was transferred to a different nursery when he started getting stronger before my other little man, that's when I felt unbelievably conflicted. Every day I spent approx. 10 hours at the hospital, but I never felt I was there enough for either of the boys, as the whole time I was going up and down the hallways trying to work out 'who needed me more at that moment'. Every time my eldest twin (by eight minutes!) progressed a little further I was so proud of him, but felt bad for my baby back in the first stage. Every time I was able to have the immense pleasure of holding my babies during kangaroo care, I was so trying to be in the moment, but I couldn't help but feel guilt for the baby that wasn't being held. The NICU staff were so incredible in every aspect, even  including helping me schedule cuddles with my boys between nurseries, feeds when they began to breastfeed and timed the care duties as much as they could so that I was able to help out with each baby equally. Only the parents and grandparents of the babies were allowed in the NICU and as my husband was having to work long hours, a lot of the time my wonderful mother was allowed to go to one nursery briefly while I was in the other when things like head scans were happening at the same time. 

After 3 weeks at KEMH, my boys were transferred closer to home in the SCN of Joondalup Health Campus. My boys were able to be in an open bassinet at this stage, and for the first time since birth, my boys were reunited and stayed side by side in the double bassinet. It was an absolutely magic moment to see them right next to each other, being able to compare 'how identical' they were, to witness them interact and to sit by their side at the same time. Just before they went home I experienced my very first and very longed for 'double cuddle', yet another incredible experience and, at 36 weeks gestation we walked out of hospital with our beautiful boys in tow, completely beaming and about to embark on the full on, but blessed journey of feeling like 'real' parents, raising our twin boys at home. 

Family pool time a couple of months ago.

Family pool time a couple of months ago.

That day was 2 years ago on the Friday just gone, and we now have two healthy, happy, cheeky sense of humoured, boisterous toddlers who bring an abundance of love to our lives everyday. For this, we are eternally grateful to the NICU/SCN's of WA for the tireless work they do day in, day out for all our babies, it brings home why it's so important to have associations such as Tiny Sparks, whose aim is to support the work of these hospitals, other associations around WA that help families and their different situations, such as the Perth + Districts Multiple Birth Association and of course, the families who experience the high risk pregnancies and what it means to have a child/children in the NICU/SCN.


By sharing your own story it helps others to know that they are not alone.  If you would like to share your high-risk pregnancy story please visit this page, or if you would like to share your NICU/SCN story please visit this page.


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