This is Ottilie.
Ottilie has congenital hydrocephalus, which began to be symptomatic when she was just three weeks old.
When Ottilie was a tiny baby, we could see that she was extremely irritable and was clearly in pain. So, I took her to our GP, who told me she had colic.
When Ottilie was nine weeks old, she had her baby check at the GP surgery and her head was measured as part of this. It was at this appointment that we were told her head circumference had jumped by six centimetres, since it was measured when she was 10 days old. I was worried, but our GP said that he wasn’t concerned and said he would measure her head again in two months’ time.
Three weeks after this, I returned to the GP. Ottilie just seemed so unwell, and I felt that something was very wrong. At this appointment her head was measured again, and her head circumference had, again, jumped. This time, it had increased by a further five centimetres. The GP spoke to paediatric consultant on the telephone who insisted that we come straight to our local hospital. Despite this, our GP explained that he didn’t believe that it was anything serious, and he reassured me that we would likely be out within a couple of hours.
It was at the hospital that our lives changed. The consultant we saw questioned why Ottilie hadn’t been sent in, after her head circumference had jumped for the first time. Within 24 hours of entering the hospital, Ottilie received her diagnosis of hydrocephalus and she was blue-lighted to the specialist hospital for emergency surgery.
Ottilie had an endoscopic third ventriculostomy (ETV), which had to be done immediately as she had become so unstable. Her surgical team were incredible. By this time, she was 12 weeks old and had been suffering with hydrocephalus since birth.
Ottilie’s delayed diagnosis has caused serious consequences. By the time she got her diagnosis, there was so much pressure on her brain that it had pushed her skull apart and this has now had to be fused back together. She suffers seizures and developmental and physical delays, which I believe have been caused by the immense pressure on her brain.
Ottilie is now 20 months old. She has a plethora of healthcare professionals involved in her care and she has to have regular MRI scans to monitor her hydrocephalus. She endured lots of physiotherapy which has helped immensely. I am pleased to say that she has gone from not being able to turn or hold her head up, to almost being at the point of walking.
As her Mummy, I am so proud of her. She is my beautiful, determined and happy little girl. However, I still feel an immense sense of sadness and frustration at the pain she suffered, which I believe could have been prevented if she had been referred when her head circumference first started to jump. The pain and distress she has endured has been awful for her and extremely distressing for us to watch.
