Registered Charity 1183086
Born at 32 weeks, Liam measured large on antenatal scans during pregnancy, and we were due a growth scan at 34 weeks. He weighed 5lbs at birth and was placed in the Neonatal Intensive Care Unit (NICU). My baby seemed healthy, and we were not offered an ultrasound head scan which is standard for premature babies born before 32 weeks.
Liam was breastfed but there were problems feeding from outset. He struggled to latch on and would struggle feeding then projectile vomit. He was tube fed but continued being sick and he did not put on weight. Liam is my third child and my second premature baby. I breastfed all my babies and was an experienced mother. I knew what I was doing. I was told that my baby was tongue tied for which he underwent surgery and he put on a little weight.
My instinct told me that this was not the problem I felt my views were not taken seriously.
At the hospital, a consultant saw my baby daily but his was head never measured and hydrocephalus was never mentioned. Once home, Liam’s head was measured and recorded in his red baby book for the first time at 4 weeks old by a health visitor and was found to be on the 99th centile. His weight was on the second centile.
There was no record of a head measurement in his hospital discharge notes.
Liam had unusual soft spots all over his head which would bulge and become transparent when he cried. He also slept for unusually long periods and did not smile but no concerns were raised by the health visitor and his head continued to grow rapidly. His grandmother raised concerns about his head size, soft spots and that he was not meeting his developmental milestones.
I became concerned by his high-pitched crying and unsettled behaviour but was told it was caused by his reflux.
Liam’s growth charts were plotted in his red baby book over the next 4 months and his head circumference was so large that it was off the scale whereas his weight remained below the 10th centile Once again, no concerns were recorded and when I mentioned it to our Health Visitor or GP, I was reassured that this was normal for premature babies.
When Liam was 5 months old, we attended a medical appointment for his older brother at a private clinic and when Liam cried, the doctor asked if the high pitch was usual.
I replied yes and he immediately asked, “Can I check your baby?”
The doctor performed an ultrasound on Liam’s head, called a colleague and then told me that there was fluid on his brain: my baby has hydrocephalus. Immediately, an ambulance was called to take Liam to A&E where a CT scan was performed, and he was transferred to a specialist neurosurgery hospital. My baby underwent brain surgery 2 days later to fit a shunt relieve the pressure on his brain. At 5 months old, Liam’s head measured 53.5cm on admission – larger than my adult head measurement of 52cm. When he saw Liam’s red baby book, the consultant could not believe that a referral had not been made. He told us that, without the urgent brain surgery, severe brain damage would have occurred.
I am very grateful for the doctor at the private clinic for recognising the symptoms and acting so quickly.
I was so shocked, frustrated, and disappointed that, despite hydrocephalus being the affecting 1 in every 770 babies, all of Liam’s difficulties seemed to be blamed on prematurity or that babies do things in their own time. The healthcare professionals caring for my baby did not recognise any of the warning symptoms of hydrocephalus, which I now know are obvious red-flag signs which should have triggered further investigations.
I feel that I was not listened to, and I feel so guilty and upset that my baby endured horrific suffering for 5 months.
I would like all Midwives, Health Visitors, GPs, and Feeding Consultants to be aware of the signs of hydrocephalus and to understand the need for an urgent referral when the symptoms may suggest hydrocephalus. I appreciate that, sometimes it may cause panic, but it is better to rule things out than miss a life-saving diagnosis. I would like people to be as aware of hydrocephalus as they are of meningitis.
I would like to see more checks in pregnancy from 20 weeks to identify risks and issues that could otherwise be missed as they develop in the later stages of pregnancy. I feel that more antenatal scan can prepare for mums-to-be for difficult births and help prepare them for any challenges.
I am so grateful for some elements of care we have received but am so frustrated with the things that were missed.
I became aware of Harry’s HAT through a friend I met through a Facebook group where I reached out for support. I met three other parents who each had a child diagnosed with hydrocephalus and had surgery in the same week. We are seven years into the journey and still speak every week. I can ask other mums who understand and can share our highs and lows, share photos, and ask questions.
Peer support is amazing.
Liam is now 7 years old and is, thankfully, doing well thanks to his life -saving surgery. He has had a tough journey with shunt revisions, infections, the shunt movement, and the development of an arachnoid cyst. He has had mobility problems and continues to have issues with balance and is monitored with a full MRI scan twice a year.