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.
