Olive: The road to a diagnosis…

The whole journey of parenthood is littered with worry from the very beginning.

When you are pregnant you experience a multitude of emotions. You have excitement, concern, joy, and sheer panic in equal and sometimes disproportionate amounts. You feel extremes of emotion like you’ve never felt before. A sense of wild and fierce love and protection that your pre-baby self could never fathom. I remember worrying about every little thing. Taboo things that you don’t dare talk about in case the worst happens and it comes true, like miscarriage or premature labour. Or even that people will judge your fears. I remember being up all hours of the morning and worrying that my baby would be born with a massive birthmark on its face and what if I didn’t love it. Of course- you immediately catch your self and tell your self not to be superficial and selfish and just downright twatish. And inevitably once your beautiful baby is with you- they are instantly the most perfect sight you have ever laid your eyes upon.

When I was pregnant I remember thinking ‘when the baby is here I can relax’. Oh, how naive. The worry simply shifts its attention to new unknowns. Was this lump here last week? Have they slept too much? Have they not slept enough? Why aren’t they crying more? My babies friend cries more than this is my baby normal? Why won’t she stop crying? What is wrong with her? WHAT IS WRONG WITH ME?!

The first time your baby is poorly, you don’t quite know what to do with your self. Every sniffle and every snuffle leaves you wanting to head straight to your GP to check them over. Of course, this makes you feel like a ‘fussy mother’, a hypochondriac if you will. But what do you do when you can sense it deep down that something is not right? I have lived through this for the past 12 months +.

Olive started down the ‘constant bug’ path. Months of seemingly never-ending illness. At first, I put it down to Primrose being at pre-school and passing every bug onto her. As we all know, nurseries and schools are just a petri dish of infectious diseases. Alas, after the 48th bout of illness (I perhaps exaggerate just a touch) I had reached the end of my patience. The lack of sleep had fully kicked in and after watching my poor baby lose weight and be poorly for months on end- I decided that I should persevere with the doctors and refuse to simply be labelled as a ‘fussy mother’. I started documenting her infections with pictures and dates. After I had a good few months of evidence which consisted of 7 ear infections, two skin abscesses, 2 chest infections, 2 skin rashes, 4 sinus infections, potential mumps and potential hand foot and mouth, I marched down to the GP with a once more snotty Olive in tow, and demanded they listened. I’m not sure whether the sheer exhaustion and wild nearly deranged eyes worked in my favour, but they finally took my concerns seriously- that or they just couldn’t be bothered to see my face again next month ha*.

*insert crying laugh emoji here (I really struggle to convey my opinions in words these days instead of yellow emoji form. Shakespeare would be a very different writer if they had them in ye olden days. Imagine Romeo and Juliette just awash with blood cover knife emoji and anger face emoji topped off with a couple of skulls. Anyway, I digress.

Olive had already been diagnosed with hypermobility, joint Laxity and vulgas Positioning of her feet and legs. At the appointment, the Paediatrician referred her to the Immunology and Infectious Disease team at the John Radcliffe Hospital where the first lot of blood tests were taken (We are so very lucky to be in such close proximity to a hospital which has the facilities to help all of Olive’s needs). Low and behold the results came back confirming what I had been telling people for months, Olive had a neutrophil count of 0.2, and as a result, she ended up in quarantine and on a drip receiving IV antibiotics. There is nothing more frustrating than knowing your baby needs help and feeling ignored.

The next few days and weeks were agonising, whilst the doctors tested Olive for Leukemia and other blood/bone marrow/ immune system failures that are simply your worst nightmare as a parent. They test for everything, even things that you wouldn’t envisage like HIV.

Eventually ruling out things one by one, we were allowed to go home and sleep and be seen in the various outpatient’s departments.

Fast forward 3 months, we finally have a diagnosis of autoimmune neutropenia. She has prophylactic antibiotics and iron supplements. They are working really well and she demonstrates daily her determined nature and fighting spirit (although this is less desirable when her tiny little shark teeth and impaling themselves into your flesh).

That’s where we are at now. Regular appointments with ENT, Infectious Disease, Haematology, General Paediatrics, and Physio.

All I can say is, thank fuck for the NHS, our friends and family and also a massive big up to Olive’s beautiful, caring and kind big sister for taking it all in her stride and simply being a joy (98% of the time, sometimes less after 5pm).




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