Where on earth do I start? These past two weeks have been nothing like I ever imagined, ever. Our family of three welcomed Baby Neal into the world at 10:40pm on Friday, October 2nd 2015. He made his entrance in true Neal style, after having my waters broken at 8:30am he waited right until the last minute to make his entrance, and he was born beautiful and loved. The hours and days after his birth were a big chaotic blur, and I’m still processing everything even as I type. I don’t really know who I’m writing this for yet – myself or for other parents/families of TOF babies. When we found out about Oliver’s condition, I did a lot of googling to try and find other people’s experiences and find stories that could help me wrap my head around what was happening. Although I found a few information based sites (this one was most helpful to me), there was nothing from a parents point of view. So I’m sort of flowing between getting my emotions out about everything, and trying to highlight the more important parts of our journey with TOF so maybe I might be able to help make something a little less confusing for someone going through it.
Baby Neal, who we named Oliver James Neal, was born with Tracheo-Oesophageal Fistula and Oesophageal Atresia, or TOF + OA, (also referred to as TEF due to American spelling) two congenital conditions that can occur on their own, but very commonly occur together, and something that Shane and I had never heard of before his birth. Although we didn’t understand it at the time that it was first brought up, it meant that Oliver’s oesophagus (food pipe) didn’t connect to his stomach, but rather ended in a blind pouch like a sock, and his trachea (wind pipe) was joined to his oesophagus. It is a relatively rare condition, present in around 1 in every 3,500-4,000 births, and in 45% of cases is an isolated occurrence – ie no reasoning why it has occurred or and no other abnormalities present.
The nurses at our hospital first knew something was different with Oliver when they tried to clear some of the excess mucous that he was having a hard time getting rid of immediately after his birth. Having TOF/OA means that your baby can’t swallow, so even the saliva that you and I simply swallow without even realising, Oliver was choking on because it had nowhere to go (even though we didn’t know it at the time). He was taken to the special care nursery shortly after he was born, where the pediatrician told us she suspected TOF/OA, a little about it, and that Oliver would need to be transferred to Sydney to have the diagnosis confirmed and treated. It wasn’t until then that I started to realise how big this was and I had so many questions… Oliver was sick? and not just a little sick, really sick, and was going to be sent to Sydney? Why didn’t we find out about this while I was pregnant? Why on earth wasn’t his throat connected to his stomach? What does that even mean? How does that even happen? Was it something I did?
Shane and I spent the morning sitting by Oliver’s crib in the nursery, unable to cuddle him or nurse which broke my heart. All I kept thinking was he was so perfect and whole inside me. My body was giving him everything he needed, it was keeping him nourished, healthy, alive, and now he was born all of a sudden he needed machines and tubes to stay alive. Machines and tubes replaced me. Like Oliver, most newborn TOF babies who are waiting to have surgery have a tube placed in their mouth to constantly suck away saliva and any other fluids that the baby cannot swallow themselves. They also cannot feed, so they have a cannula/central line put in so they are getting fluids until their repair.
I wanted so badly for things to be ‘normal’ and for this to all be some big mistake. I was joking with the midwives and nurses that they would go to all this trouble to transfer us and it would turn out to be nothing, and we’d be on our way home later tonight. They must have thought I was nuts! It was mid morning when we were told there was room for Oliver at The Children’s Hospital in Westmead at the NICU, and a NETS team were coming to take him there.
We got to the NICU at Westmead, and as soon as I walked into the room tears started. I had been crying most of the morning, but walking into the NICU was overwhelming and it took the breath out of me… I was physically and mentally exhausted, and the reality of what was happening hit me like a freight train while I was standing there watching them set Oliver up in his new crib. Everyone I talked to was incredibly soft and kind, like they knew I wasn’t holding it together very well. After they had got Oliver settled, they starting running some tests, I was surprised at how quickly they moved. All the tests were pretty non-invasive, and included the beginning of the VACTERL testing. Again, something I didn’t know at the time, VACTERL is an acronym for a group of other anomalies newborns that have TOF/OA are commonly diagnosed with. Although nothing was picked up during my pregnancy, there was a chance that Oliver’s problem extended beyond his TOF/OA and I was worried that this was just the beginning.
Later that night, a doctor came around and explained to us that Oliver did have TOF/OA, and he would need to go into surgery in the next day or two to repair it – a relief, because I thought for sure Oliver was not an emergency case, there were clearly a lot sicker babies here and he would have to wait weeks until he would get his surgery. I’ll do a separate post on his surgery and coming home in the next few days, please bare with me. Even though I’m probably sounding very calm and ‘matter of fact’ about everything, it has taken a lot for me to revisit the past two weeks, hour by hour, minute by minute playing back over in my head. In some ways I think I just want to forget about everything that happened, we are home now and we have a beautiful baby boy who we are lucky enough to have by our side everyday. Other parts of me don’t want to forget. I want to remember what a fighter he is, how blessed we are to have been given Oliver and how tough his first moments of this life were. Maybe one day I won’t think about it with sadness, but rather appreciation and peace.