This is Ellie's Journey so far. On the 6th June 2011, Eleanor Elizabeth Nickless made a premature entrance into the world at 36 weeks after a 60hr labour, weighing in at a not too shabby 6lb 1oz. Over the next few hours it became clear something was wrong as she showed no interest in feeding and was turning bright yellow so she was quickly transferred to the Special Baby Care Unit where she stayed in an incubator for 2 weeks being treated for Transfusion Level Jaundice. After which her liver levels where safe enough to be discharged and we looked forward to bringing her home to start our new life together as a family.
I was enjoying my first nervous day as a new mum at home when I received a knock at the door from a Health Visitor saying they had been trying for days to get hold of us. I explained that we had only left hospital the day before so had not been home to take their calls. She went onto tell me that we needed to travel to King’s Hospital in London for an appointment to confirm a positive test result that showed up on Ellie’s new born screening (heel prick test). It was suspected that Ellie had Cystic Fibrosis but the specialist team would explain everything to me the next day and we were NOT to scare ourselves by googling CF online in the meantime.
As soon as I shut the door I just crumpled to the floor with Ellie in my arms but through the tears I knew I had to find the strength to call my husband Colin at work to give him the terrible news. I can’t remember what I said to him other than “our little girl is going to die”. Obviously we were both inconsolable that evening and of course went straight to the laptop to look online about what having Cystic Fibrosis meant. There were lots of words like “life limiting”, “life shortening”, “average life expectancy”, “transplants” & “terminal” at which point our life just fell apart.
The next day 28th June 2011 was to be officially the first of the rest of our lives with our not so welcome friend Mr. CF. We headed home with an official Cystic Fibrosis diagnosis, the knowledge that both myself and Colin carried the CF genes that was passed onto Ellie, bags of several medicines we now needed to give her daily to keep her alive & healthy plus a head full of how to give a 3 week old physiotherapy to keep mucus off her lungs. It was a very, very steep learning curve!
However as the weeks and months passed we become more accustomed to dealing with those CF curveballs such as bizarrely named bacteria being found causing infections in Ellie’s chest, more treatments, avoiding sick people like the plague (if you excuse the pun), hospital admissions and basically finding yourself talking like a medical dictionary to everyone who made the mistake of asking about your baby!
When Ellie got to be around 6 months old we started to notice that she was a slightly let’s say “eccentric” in some of her ways so I started to mention what I thought maybe unusual to the professionals that were involved in her care. She was pulling her hands away like a cat when I tried to touch them, limited eye contact and never responding to her name. However on the flipside she was incredible advanced in other developmental areas. I tried to tell myself I was being paranoid but the word Autism was always there in the back of my mind. With each month that passed it become more and more apparent that Autism could be a reality for Ellie. She never crawled and started walking late at 18 months, she still had no words, she threw up daily at the sheer sight of food and would only eat yogurt and drink milk, she also regularly lined items up whilst enjoying a frantic flap of her arms. At the same time her intelligence was frightening and problem solving complex to say the least.
We were very grateful at this time to have access to such a fantastic medical team who instantly took on board our serious concerns. I still remember vividly her Dr carrying her to a mirror whilst trying to engage her attention and failing. I knew then that this confirmed my fears and the hope I had somehow had been clinging onto that I was wrong had gone. A week later when she was 18months old Ellie was seen by a Clinical Psychologist straight away for an initial assessment. Which again confirmed she definitely needed to be referred again onto the regional Under 5’s Assessment Centre for further monitoring. She attended there once a week for the following 2yrs to help support Ellie’s growing needs and further added to Ellie’s medical team was, Occupational Therapists, Portage workers, Speech & Language Therapists, Music Therapist, Key Workers, Special Advisory Teachers etc , etc, etc. It felt like I needed to change our front door to being a revolving one!
Finally just before Christmas 2013 Ellie received her official Autism diagnosis to add to her Cystic Fibrosis which made her a rare breed indeed. Sometimes having this dual diagnosis for her can feel like a cruel joke as they seem to contradict each other at every turn and I imagine them having conversations that go like this:
CF: “I need you to eat much more fat than an average child as your pancreas doesn’t work and you struggle to put on the weight you need to fight infections”
Autism: “I will make you find food so repulsive that you will vomit when you see it and give you no sense of thirst or hunger”
CF: “You need to do any nebulised treatments a day for the rest of your life to fight infection and keep you alive”
Autism: “I will give you sensory issues around having masks near you face which makes you so distressed you will break blood vessels all over your body”
CF: “You need to have physiotherapy numerous times a day which involves allowing someone to beat your chest to keep mucus from blocking your lungs”
Autism: “But I don’t want anyone touching you”
CF: “I block your internal organs with sticky mucus which will cause pain all over your body”
Autism: “I make nonverbal so you will not be able to communicate when you are in pain where it is or what is wrong”