Our little big head

We spent five days in hospital. More because I had really messed things up by fainting in dramatic style and then struggling to regain any sort of functioning blood pressure (nobody had planned for that!). Harry on the other hand seemed to be doing remarkably well. He had an MRI at just one day old. I was too ill to go, but Matt pushed our tiny little bundle across the Hospital to the MRI suite where he met a Dad whose daughter was very ill. The Dad apparently saw tiny Harry in his huge, plastic cot and cried.

The MRI showed that the arachnoid cyst was taking up about a quarter of his brain- however Harry did, as Harry does and continued to astound the medics.

During this time I remember hordes of medical people coming in and out of the room to poke and prod at Harry. I also remember, medical students standing at the bottom of the bed staring up at both me (probably not a great angle) and Harry. I can clearly remember one saying to his colleague; “Great I haven’t seen this before…” “well I am glad to oblige” came my exhausted, hormonal and less than quick witted, reply.

After being home for two-weeks we had another consultant’s appointment. We were ushered into a small, hot room with the lovely neuro-nurse who had been present just after Harry’s birth . The consultant brought up Harry’s scans on the computer. They showed a massive white blob which was the cyst,- to me, it seemed to swamp his tiny brain. He paused for a moment and then said “he’s doing well and as he could breathe independently at birth, you can go home and treat him as an entirely normal baby. Just measure his head circumference and phone it through every couple of weeks”.

We walked out of the room into the crowded waiting room and cried. So many faces just stared up at us, but in that moment I didn’t care. Harry was going to be OK and that to me was all that mattered.

Shortly after, I began to feel that Harry wasn’t right. He screamed, lots. Now I know that this is an occupational hazard with babies, but by the time Harry came along, I had had 3. Harry’s scream could pierce glass and his obvious distress seemed to cut right into the centre of my heart.

Now when the world seems overwhelming, there is always someone who arrives like a White Knight. In our case, the Knight took the form of Karen, our Health Visitor. She was on my side from day one. Harry kept screaming, couldn’t be put down and had begun to develop a strange twitch around his month. Her mantra was “if you don’t think it is right- it not! Trust your judgement and don’t take any crap”. On one of her visits she looked me in the eye and said “Harry worries me, I am calling the neuro-unit”. She also measured his head and told me with clear sadness in her eyes- “it’s jumped”.

We were soon to realise that the twice, then weekly, head measurements, meticulously recorded in his Red Book, were breath-holding, heart-stopping moments. The little number on the tape was guaranteed to either leave me in shaking floods of tears of make me punch the air, like a victor. Basically, whether our beautiful newborn had free fluid in his brain or not was established by the results displayed on a paper tape measure.

I soon learnt, that unlike my others, the red book simply wasn’t going to suffice. Harry was going to need a whopping big file and that the contents of such would quickly rule my life.


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