WRITTEN BY MOTHER DANNI
Our son, Noah, was diagnosed at 7.5 months old with congenital hydrocephalus due to acqueductal stenosis. From 4-6 months of age his head began growing rapidly compared to his height and weight and a scan at 7 months old confirmed hydrocephalus. He had an operation for a VP shunt a day later as his head growth accelerated even more (11cm in circumference in 5 weeks).
After his surgery we noticed so many changes – he started baby babbling, he had much more hair than we realised, he began to sleep better and sitting upright unaided. Leading up to his diagnosis he was waking every 30-45 minutes through the night due to being in pain.
Noah is now nearly 11 years old. In the 10 years since his diagnosis and operation he’s been very lucky to not have had any further surgeries, but has had several ambulance rides and hospital stays due to his head causing really bad days. These involve what I can only describe as a mutant level migraine, vomiting, lethargy to the point he’s too tired to talk or move, and just so much pain. We’ve been told his shunt drains too much on occasion and this could be part of the reason for the bad days, but also a head cold or some childhood ailment can trigger him also. He went through a stage of having these bad days every 6 weeks or so from when he was 5-9 years old, but touch wood, he’s been in the clear for nearly 2 years now! Because of this, surgery to replace his now outdated valve in his shunt has been shelved, but it is something we may need to revisit down the track.
The only other noticeable part of Noah’s life most likely caused by his hydrocephalus is early onset of puberty. He had to start wearing deodorant at age 7, and from just before he turned 10 until now he’s gone through full teen development. He’s the same height and development stage as his nearly 14yr old brother.
He’s such a champ. He’s been so great with any medical procedures he’s had to go through, and is just a really good mannered, funny, intelligent and thoughtful young man!