Its been nearly 3 years now since Alfie entered into the ‘safe zone’. He will be 9 in January and 3 summers ago his tracheostomy was successfully removed. Its pretty crazy to think we spent 6 years living in fear and fight/flight mode with a boy who was so medically vulnerable and needed 24 hour care and observation to ensure he could breath. It feels really abstract writing those words and re reading them as I literally don’t feel connected to that life any more – a little bit of disassociation in order to protect myself perhaps.
Life all got a bit mad after Alfie started to lead a safer life. Me and Tom separated and moved into new houses. I quit my teaching job and retrained as a life coach. And then of course there was a global pandemic. It felt like because Alfie was OK for the first time in his life, we were suddenly allowed to focus on the other stuff. Sadly Tom and I could no longer cope after years of shared trauma, anxiety, stress and PTSD. Luckily we discovered we actually make a great non-married co-parent team with the help of two gorgeous new partners by our sides.
Bizarrely when the pandemic first hit, instead of fear I felt a surge of adrenalin and weirdly back in my comfort zone maybe like an ex soldier going back into battle – scary but familiar. As the world suddenly panicked about the spreading of a virus and getting sick, I dusted off my armour and gladly put it back on. I know this world – a place where you live in fear every day, worrying if someone touches or coughs near your child then they might end up in hospital. I lived that life for 6 years straight. How utterly screwed up that that had become my familiar ‘comfort zone’. Trauma does strange things to you.
After sitting in my doctor’s office a couple of summers ago at rock bottom, suffering flash backs from the hospital and having daily panic attacks – I got signed off work, referred to have EMDR sessions and advised to take anti-depressants. The shame and guilt of getting signed off work was awful – being a teacher and knowing the affects it would have on the students was something I lost a lot of sleep over. Being passionate about functional and herbal medicine I decided to decline the anti – depressants and go the natural route. I stocked up on Ashwaganda, Passion flower and St John’s Wort as well as a load of b vitamins, magnesium and Omegas. My 12 week course of EMDR for my diagnosis of PTSD was a game changer and took me safely out of the ‘I think this trauma is still real and happening to me now’ zone and into the ‘I know these are just memories’ place.
Fast forward a couple of years of feeling fairly OK with the PTSD, we had an appointment at Bristol Childrens hospital this week to discuss Alfies upcoming leg surgery. When Alf was in intensive care in his incubator he got sepsis from one of the long lines. It was touch and go for days and this was one of the times we nearly lost him. He pulled through after days of powerful meds and round the clock care. His CRP levels finally came back to safety and we were able to put it behind us. A couple of years later we noticed his left leg was growing at an unusual angle and was shorter than the right. After lots of specialist appointments in Exeter, Plymouth and Bristol we were told that his episode of sepsis as a baby probably silently spread to his bones in his leg and caused this abnormality in growth. We were now faced with Alfie having one leg significantly shorter than the other and were told this would continue to get worse up until he stopped growing around age 16.
The orthopaedic team in Bristol told us to expect 3 rounds of leg lengthening surgery as well as a leg straightening procedure and an operation to shorten his right leg for Alfie across the next few years – each operation involving a frame around the exterior of his left leg with pins going into the bone. We were told this frame would have to stay in place for around 9 months each time and that we would have to turn the dials on the pins every day to lengthen and stretch the bone. Alfie would be in a wheelchair and on very strong painkillers the whole time. Due to his delayed development and communication issues we wouldn’t be able to explain what was happening to him and why and he wouldn’t be able to let us know how much pain he was in. Fuck that.
With fear in my heart this week I started to mentally prepare for the hospital appointment. Terrified of what the team would tell us about when all this surgery had to start and totally freaked out at the thought of taking Alfie back to hospital after a couple of years of safety, peace and quiet away from medical procedures. The trauma flash backs and PTSD triggers came flooding back in. The appointment was on Tuesday, I spent all of Monday shaking and crying. I was walking around experiencing the strongest flashbacks id had in months. I could see him so clearly fighting for his life in the intensive care wards. I could smell the cleaning chemicals and hear the machines noisily beeping away. I could see the left over pizza in the box in the nurses office as they sat me down to tell me they didn’t think he was going to make it through the night. I saw his little grey body lying there all cold and limp after they had had to attempt an emergency cut in his throat to get him to take a breath. I did my usual thing to cope – called as many people as I could, walked around, listened to loud music to distract myself and took myself to a yoga class. After hearing the soothing and comforting words from my amazing partner on the phone and a cup of tea with a gorgeous friend in her sunshiney garden with her beautiful daughters I started to land and ground. PTSD is a fucker I can tell you that but my god I felt so lucky in that moment to be surrounded by such a caring support network.
The day of the appointment arrived and I felt tired but ready for it. We drove up to Bristol and Alfie happily walked into the hospital taking in the sights with a spring in his step. The team gently talked through the options with us and to our absolute relief and happiness they came up with an alternative plan to all the invasive surgery they were planning. We discussed the idea of instead of all the surgery, the potential of having just the leg straightening operation in a few years that wouldn’t involve the frame and the pins and would be one more simple procedure. Although this would mean he would have to learn to live with two very different length legs, the team felt confident Alfie could learn to use a prosthetic limb instead. This was amazing news to hear. Its unbelievably difficult and heart wrenching to have to make these sorts of decisions on behalf of your non verbal child but certainly how we feel at the moment is that this is potentially the best option for our boy rather than putting him through the trauma of more invasive and painful surgery over the next few years where he doesn’t understand whats happening to him. We’ve all been through enough trauma as a family. Its time to rest up, keep life simple and enjoy the beauty of the everyday things that bring Alfie so much joy. Ducks, diggers, the ocean and cheesy chips. Ill take all of those any day over the big stuff.
Bringing up preemie boys 