This was a guest post on the marvellous Great North Mum’s Blogging for Change campaign and was written for NHS change day. It kind of sums up the first two years of testing when we didn’t know what was wrong or how serious it all might be.
I have been meaning to write this letter for a while now. It is two years late but I have only just felt ready to say the words to you. I have only just realised that they needed to be said.
I have a lot to say thank you for and also a lot to apologise for.
We first met when Gabriel was five months old. It was a neonatal follow up after his 27 day stay in the unit following his birth. At first he couldn’t regulate his rapid breathing and then his heart dotted with holes was discovered. You weren’t there during that stay so this follow up appointment was our first encounter.
I left that initial appointment feeling positive – you had swiftly arranged physiotherapy for his poor head control, referred us to a development centre and said you would review again in three months. Already we were mentally scarred from our hospital experiences and knew a rocky road was ahead.
You were a breath of fresh air at first, but that was short lived. No one has come close to breaking my heart over and over the way that you did. I say break but I mean smashed – again and again.
As Gabriel got sicker and sicker (from undiagnosed coeliac disease/milk protein allergy), you got more and more concerned. The testing began. The first was for muscular dystrophy, then Prader-Willi syndrome. Before we had chance to count our lucky stars, you would shake your head and say not yet. Next was a sweat test for cystic fibrosis, a MRI brain scan, a basic genetic screen followed by an in-depth array. The time between each appointment would be spent seeing new specialists, waiting on results and saying silent prayers of thanks each time one came back negative.
Each new appointment your face remained sombre. Your list was long and the diseases were getting worse. You never gave us chance to pause and reflect. Our baby was ill, getting worse each day and you felt compelled to get to the bottom of it. You pushed and pushed us down a horrific road when all we wanted to do was dig a hole in the garden with our children and bolt a trap door shut across.
Metabolic testing ensued. Negative, negative, negative. I loved that word. At last I felt it was time to let out a deep breath, but no. You had saved the best for last – a condition called leukodystrophy (where the brain dies slowly) had been on your mind for a while, but for that to be ruled out we’d have to wait for a second MRI brain scan when he was two. That was months away. That period of my life was the worse I had ever known. I came to terms with a lot in those months. I knew I could be a mother to a son with a disability, but knew I couldn’t (just please couldn’t) be the mother to a child with a progressive life-limiting disease.
How we blamed you for our pain. If it wasn’t for you we wouldn’t be in this hell of testing. We even met the mother of another of your patients who said she hated what you were doing too. The irony that we met in the parent’s room of the paediatric intensive care unit is not lost on me. We were two scared mothers with very ill babies who didn’t like what our doctor was telling us.
Thankfully, Gabriel’s MRI scan was clear and I started to embrace, accept and understand this child of mine more. As long as he didn’t leave us, we’d face this new life with a brave smile.
Every appointment I wanted to prove you wrong. I wanted Gabriel to show you he was not this boy you suspected. I longed for him to get better, to hit a new milestone so I could say “see I told you so”. The thing is you knew this. You were always so very kind. You offered to sort out some respite for us (hell no – he’s not sick). When I came with my lists of questions, you took them away and tried to answer them in his clinic letters. When I called, you came to the phone. When I pestered for results, you chased on my behalf. You called the same day you knew the outcome of any test. You banged on many doors for him to be reviewed by others and asked advice from all your colleagues.
You even referred him to a professor from outside your hospital trust. One you had heard speak weeks earlier about rare food allergies and wondered if he might have some different answers. He did and we finally got the coeliac/milk protein diagnosis. A dairy and gluten free diet turned things around and he started getting stronger day by day.
You kept Gabriel in your clinic until he was nearly three (a long time for a neonatal doctor) as you wanted him to have a good doctor overseeing his care. We get this with the professor and his team have since uncovered new treatable things about Gabriel (growth hormone deficiency). They were able to go down this route only because your devotion, your speed, your diligence left them at a different starting point with so much ruled out.
I knew you did all this and didn’t appreciate it at all. Not then. I do now. I see friends with older children begging for tests, praying for one doctor to start thinking outside the box, and with many a cruel diagnosis still hanging over their heads.
With NHS Change Day upon us I want to say thank you for all you did, for never giving up and getting us to the place we are today. A place of acceptance and hope.
Once again, thank you.
Alison Bloomer | Gabriel’s mum