I’ve had a bad day today, I feel like my anxiety takes over some days. However, I find it’s the best time to open up to you guys.
So after the traumatic birth, my son needing surgery and having stents to keep his airways open, I next had to go to Liverpool hospital. When Oakley was born I had an option to go to Great Ormond Street or Aldehay Liverpool. It would have been better for me to go to London as my family are close to there. Newcastle hospital don’t deal with craniofacial. However I spoke to the genetics team and they said if it was their child they would go to Liverpool, so my decision was made on that.
It was only the 4th October and I had to travel to Liverpool alone. Oakley was on a sats monitor which told me if his oxygen levels were ok or not, he had a suction machine, a feeding machine, the rest of the medial equipment and a changing bag. I took the train as I couldn’t travel that far with him in a car seat, his oxygen levels seemed to drop after around 30 minutes of being in a car seat.
I didn’t sleep the night before, I was still confused about why I needed to go so far when there was a hospital up the road. I don’t think I realised how rare this condition was at all. Things weren’t great at home, I felt very alone inside and I was struggling to juggle my time with all the medical care Oakley required. I was also working on content for brands on Instagram – people may laugh but that’s my job and it takes time to make videos and edit them how the brands want them. I couldn’t take maternity leave like other parents, and I have 4 children to look after.
That night I slept on the sofa with Oakley next to me. I got up early, sorted him and got a taxi to the station. I had chest pains from anxiety, I was scared, and I was tired as Oakley was feeding every two hours.
After nearly a four hour journey with trains and taxis I arrived. The hospital in Liverpool is beautiful, you can tell it’s a children’s hospital. Oakley had to have a MRI and CT scan. I’ve never taken a child for one of these before and wasn’t sure what to expect. They swaddled him and he fell asleep. The scans were done for the next appointment with the team.
I went to the outpatients place as I had to go to meet the team.They called me in and I was in for a shock. As soon as I walked into the room I burst into tears, I was feeding Oakley at the same time. I’m sure he felt how uncomfortable I was feeling as he threw up all over me. There were at least ten people sat in a room waiting – from a dentist, speech and language, craniofacial nurses, neurosurgeons, craniofacial surgeons. The lot!!!
I sat down to try and sooth Oakley but he wasn’t having any of it. He was screaming at the top of his lungs. He knew his mum didn’t want to be there. The craniofacial nurse asked to hold Oakley to help me so I could talk. I had so many questions and felt so vulnerable being there alone. I cried and cried I couldn’t even get my words out. The first thing they said was ‘are you here alone?’ I said yeah I am. They said well there is a lot of information to take in Talia. I had no choice but to be there alone. My family live so far away and things weren’t great at home so I had to just put my big girl pants on and go there.
They introduced themselves, each person who was there. It was so overwhelming and I remember saying why are so many of you here, I don’t get it. Then they went on to say this condition Oakley has is so rare. There are not many children with this condition what so ever. I started to feel angry again, why does he have this condition? Why can’t you tell me why? They just looked at each other and then one spoke up and said there is no reason it’s something we can’t explain. I felt sick to my stomach again. Next, Oakley’s scans came up on the screen, they said he will need surgery soon but not right now. One of the surgeons got a skull out on his hand and showed me what’s happened to Oakley’s brain and skull and how it was fused. I started to understand why my sons head was so different. I knew his head looked different, but I didn’t actually know how or what that even meant for Oakley. They explained that he will need a few surgerys on his skull and then a midface surgery when he’s slightly older. The skull had to be done when the time was right. So the MRI he had done showed them that it wasn’t ready now but that he will be ready in a couple of months.
I said to them I had seen other Apert kids and he seemed to be at the mild end of the spectrum. One of the surgeons said I think he’s more middle to higher. I actually thought I was going to throw up. Oakleys breathing wasn’t under control, and with the skull they explained about the whole skull being fused not just part of it.
What does this mean for my son, what sort of life is he going to have? They couldn’t give me an answer to that. They would just say “we’ve had Apert patients go to college and university, but then we have had patients who need 24 hour care”. They couldn’t give me any reassurance on what kind of life Oakley would have. I felt like my whole world was crashing down. I had a migraine from hell and was emotionally drained.
So what’s next then, where do I go from here ? I said to them all. “Well we wait” the surgeon said, “we bring you back for another MRI and CT scan soon to then book the first craniofacial surgery”. I just couldn’t digest what the hell was happening to be honest.
The next question got me in a state. “Do you have support and are you coping” I said to them well no I don’t, I feel very alone, I feel like I’m dealing with everything to do with my son and it’s a battle everyday, but I have no option other than to cope do I? I’m his mum.
They went on about support groups, but I just didn’t want to hear it at that point. I had Sarah to speak to but that was it. (Sarah is Kayas mum who also has Apert). I left the room and went to change Oakley, one of the nurses followed me. She showed me where to go as I looked lost then I just sobbed, I felt so hurt, my heart was broken. My family was falling apart, I’d just given birth, and I’m in Liverpool talking about how my son’s skull needs reconstruction, let alone all the other things on his body which he needs support and surgery on.
The nurse told me it will get better and she promised me I would start to feel better and this would become my new normal. I changed Oakley, got in a taxi and jumped on train to Newcastle. I called my parents to tell them how it went but couldn’t even speak properly.
I blamed myself a lot and I don’t even know why? Nothing could take this pain away nothing. Things couldn’t get any worse…could they?
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