UCD 2021 – Ellie’s story

This is our family – Ellie, Stewart and our swan Fraser who is 16 months old.

Concerns about Fraser started within minutes of him being born. The doctor checking him over noticed his dysmorphic features and that he was very floppy.

Nobody really explained what any of this meant at first, but they took lots of blood samples from Fraser to be sent off for testing. The next day he was transferred to NICU and the day after that taken by ambulance to Alder Hey Children’s Hospital where we spent the next six weeks, including Christmas and New Year.

Those first weeks in hospital were some of the darkest in our lives. At first it was a constant stream of scans, X-rays and tests. At 10 days old Fraser underwent urgent heart surgery and things just seemed to spiral from there. He wasn’t gaining weight, developed an oxygen requirement, and started having episodes of jerky movements. It was hard to hold or cuddle him because of the number of tubes and wires. None of the test results were coming back with anything to indicate what was causing all his issues, and we were shuffled round different wards as each team investigated but came up with nothing. Eventually, they checked Fraser had a safe swallow, arranged for home oxygen, and sent us off home to be followed up by our local hospital.

At this point we still naively thought that one of the results that we were waiting to come back would surely give us an answer, a diagnosis, a name for whatever was up with Fraser. It was only once we had an appointment with a geneticist that we discovered that being undiagnosed could be a thing!

That’s when we found SWAN UK. We were already a couple of months into the COVID-19 pandemic at this point, and, being first time parents to a swan at a time when the NHS had effectively shut up shop, we felt very alone and confused.

Joining SWAN UK gave us a place where people understood what we were going through, and where the support which was hugely lacking from anywhere else was available in abundance.

As Fraser’s physical and neurological challenges have become more obvious and he’s gained new diagnoses (the main ones being hypotonia, global developmental delay, epilepsy and a severe visual impairment), the SWAN UK parent/carer Facebook group is often one of the first places we turn for real information – not the generic leaflets that we get handed in hospital but real life experience of medications, procedures, information about support or services that we should be pushing for, or tips that might help make life a little easier or more fun for Fraser and us. 

Swan Fraser lying down and smiling

Because of the pandemic, all of our involvement with SWAN UK so far has been virtual. Stewart often joins the dads’ group Zoom call on a Wednesday night and enjoys catching up with some of the other guys. Sometimes they talk about their swans, sometimes it’ll be about non swan things. Whatever the topic of conversation, he always comes off the call happy and says it’s good to chat to people who just get what the rollercoaster of life with a child like Fraser is like. We’re both hoping that as restrictions begin to ease, there might be some events local to us and that we’ll get to meet some other SWAN UK families.

This year we’ll be celebrating Undiagnosed Children’s Day for the first time. We’ll probably reflect on the challenges that life has thrown us on this path that we never signed up to walk down, and then we’ll do what we do every day and focus on Fraser and the things he enjoys the most – banana, chocolate buttons, his feet being tickled and bath time. And his smile, it’s a rare treat so we always celebrate when he gives us one!

Join our Community Of Families