Alasdair is our first born, he came into the world very quickly at 38 weeks, four days after my maternity leave started which was a bit of a shock at the time. I always wanted to breastfeed so with lots of encouragement and support this is something I was able to achieve, however in the early days Alasdair wouldn’t latch and wasn’t putting on weight very well, losing up to 10% of his birth weight. This prompted my decision to start pumping which luckily, I was producing more than he needed, at day twelve Alasdair was back to birth weight and was discharged by maternity care. I remember thinking every time he was laying down to latch, he would scream in excruciating pain which mother instinct thought something wasn’t quite right. I was reassured that he was probably just hungry and lazy, boys tend to be (I was told), so life carried on with lack of sleep, nappy changing, a screaming baby and pumping.

At six weeks old we went for a routine GP check at which point it was discovered that Alasdair’s head circumference was measuring 10 cm more than his head circumference at birth. I could see in the doctor’s eyes she was concerned, but we were sent away for follow up with the health visitor for weekly head circumference measurements. At eight weeks old Alasdair’s eyes had started to sunset and his forehead looked like it was bulging, and with Dad away training in another country for his role in the Army, I took him straight to the local A&E.

It was then that Alasdair was diagnosed with Congenital Hydrocephalus and I remember being told not to Google it but of course I did, as we all do. I began thinking that my child is not going to have a normal childhood or do the things that my friends’ babies would be able to do but, how wrong I was.
After being diagnosed, we were transferred to the John Radcliffe hospital for an ETV (endoscopic third ventriculostomy) which happened the morning after. Unfortunately, a few weeks later Alasdair’s eyes started to sunset again as the ETV had failed. A VP shunt was fitted when Alasdair was 11 weeks old and lasted a few years. Since then, has undergone three shunt revisions and numerous hospital stays with his last shunt being fitted in April this year.

Alasdair is now five years old, and he lives what I would call a normal life for a five-year-old. He is in Year One at school, he is a very sociable, kind and a very loving boy, especially to his younger brother Finlay, we couldn’t be prouder of him. However, we feel like we are constantly trying to be heard for Alasdair both medically and educationally ensuring he gets the best support and care in both settings.
Our advice for any parents who have recently had a diagnosis especially if they are first time parent’s is don’t ignore your feelings or concerns you know your baby best, you are their voice. Also, always remember your child isn’t the condition, it’s just part of them which makes them
special.

I am now training to be a midwife and within my practice -when I am qualified, I will ensure families I care for , and even my colleagues, are aware of Hydrocephalus and the importance of head circumference measurements.