This is a picture of my youngest son Ethan. In the first photo, he was one Month old, and had recently been diagnosed with hydrocephalus.The second was taken on his tenth birthday, just last week. This means that hydrocephalus has been a part of our lives for ten years now. Before then, the only knowledge I had of the condition came from an old storyline in British soap Eastenders, Where characters Ricky and Bianca had chosen to have an abortion following the discovery that their unborn child had the condition, along with spina bifida. I didn’t know anything about it except it roughly translates as water on the brain, which is pretty much what it is. A lot of people have heard of it but don’t really know what it is. By sharing Ethan’s story I hope to raise awareness, not just of the condition itself, but the charities that work so tirelessly to support those affected and help fund research and generally improve quality of life.
Ethan was born 9 weeks early,weighing 3lbs 10oz and following a traumatic birth, where the umbilical cord was wrapped tightly around his neck, he suffered a bleed on the brain. We were given this devastating news when he was exactly one week old, along with the news that it had caused damage within Ethan’s brain. Hydrocephalus was mentioned during this conversation, more to make us aware then anything else. They seemed positive that Ethan had a pretty low risk of developing the condition but he would need to be monitored quite closely. He was still on the special care baby unit at this time, and one week later, I arrived at the unit and knew instantly that he had developed hydrocephalus. His fontanelle was full and bulging, making his head appear cone shaped. I had read a little bit on Hydrocephalus since it had been mentioned last week and immediately recognised the signs. It was later confirmed by Doctors and so our hydro journey began.
In some cases of hydrocephalus that are caused by bleeds within the brain, there is a chance the condition can rectify itself. The hydrocephalus is caused when old blood from the bleed collects in the ventricles (the fluid filled spaces within the brain) blocking the absorption of CSF (Cerebro-Spinal Fluid). If the old blood re-absorbs then usually the ventricles will begin to absorb the CSF as normal, so the hydrocephalus no longer exists. The plan with Ethan was to wait it out and see if this would happen. The only permanent treatment for hydrocephalus is the insertion of a shunt by means of surgery. A drain is placed into the ventricles of the brain and is connected to a valve and tubing which carries the excess fluid down into the abdomen, where it is reabsorbed naturally within the stomach. The fact that it is permanent meant the Doctors weren’t keen to carry out such a big operation on a small baby if it my not be needed in the long term. I was more than happy with this, I was in no hurry to sign my two week old baby boy up for brain surgery.
The internet was still fairly new to me in these days but it was the easiest and quickest way to research Ethan’s conditions. Some of the information I found was down right terrifying to read, and I felt overwhelmed by the array of different information. What I wanted was a parents point of view, not a medical write up I struggled to make sense of or understand – I got enough of that from the doctors and neurosurgeons, and I wanted it from a trusted source. All my prayers were answered when I discovered SHINE Charity (then known as ASBAH), the UK’s official charity for Spina Bifida and/or hydrocephalus. The information I found was detailed, yet easy for those without any medical knowledge to understand. I will honestly say, that the majority of knowledge I have gained over the years has come from SHINE. The services they offered where a god send; from an informative handbook – Your child and Hydrocephalus – A practical guide for families, which could be ordered online, to area advisors, who would visit home, or the school your child would attend, to provide information and answer questions. A mention also has to go to Benny Bear, a character they have created aimed at children with hydrocephalus His stories are written in a simple, non-scary way to help children understand about hydrocephalus and having a shunt. Ethan is a big big fan of Benny’s and we have had the pleasure of meeting him on several occasions at SHINE events, and also receive a card from Benny Bear every year on Ethan’s birthday.
Ethan was in and out of hospital with his hydrocephalus, he had a total of five lumbar punctures to drain CSF fluid as a temporary measure, before he finally had surgery to insert a Shunt at 3 days short of him being 6 months old. It was a hard and distressing time. Nobody wants to take their baby down to theatre for any procedure, let alone brain surgery. There are many risks with a shunt insertion, including infection, bleeding within the brain and brain damage, but without the shunt, the ventricles inside his brain would just keep filling with fluid, putting pressure on his brain which would eventually lead to brain damage, coma and even death. As much as I didn’t want him to have the surgery, I knew without it we would probably lose him, and I wasn’t prepared to bury another son. Luckily Ethan made an astounding recovery following surgery and came on in leaps and bounds.
One thing to remember about hydrocephalus is that, at present, it is an incurable condition, although treatable through use of a shunt. If the shunt stops working, then the fluid in the ventricles will increase and the symptoms of hydrocephalus will return. This can happen due to infection, shunt blockage or damage along the shunt, and results in either part of, or all of the shunt being replaced. As Ethan was only 6 months old at the time of having the shunt, the tubing was coiled into his stomach. We were told by the consultant, that in the best case scenario, he would expect that Ethan would need a longer tube inserted around the age of seven. He is now ten but, due to a growth hormone disorder, he is only the size of an average five year old, so we are hopeful we have a good few years before he has to face surgery again. He has also managed to avoid any of the complications as of yet, and we are proud to say Ethan still has the original Shunt in place. As a parent of a child with hydrocephalus you always have to be vigilant in recognising signs that there may be a problem with the shunt. We have to keep the hydrocephalus at the forefront of our minds at any signs of vomiting, headache, drowsiness, all common symptoms in numerous childhood illnesses. Not many parent’s can say that when their child is unwell they pray for it to be a bug or the flu, and be relieved when a cause for their symptoms become obvious. We spent a lot of time in and out of hospital with Ethan during his first few years of life, I didn’t trust myself not to dismiss symptoms of shunt failure for something less serious so I would have him admitted at the drop of a hat. I would rather feel like I was wasting hospital time over a nasty cold than leave it too late for my son to access life saving surgery, although fortunately I was never made to feel like a time waster. I also have to make sure any one else who takes responsibility for Ethan, school teachers, youth workers etc, are aware of the symptoms and know to contact myself or the hospital straight away should he show any of the symptoms.
I found it amazing though, that whilst writing Ethan’s part of my story for my book, Heartbreak and Miracles – My Experiences of Premature Birth, how much we actually went through in those first few months of his life. Luckily I still had Ethan’s red healthcare book which contains pages & pages of hospital stays, treatments and so on. It’s so easy to put it all to the back of your mind and try to live life as normally as possible. Revisiting those times was harder than I had imagined, but also renewed my pride and relief that Ethan has been such a fighter, despite what life has thrown at him. He hasn’t just had the hydrocephalus to contend with, but also Hemiplegia (a form of Cerebral palsy), Visual impairment, Neurofibromatosis (a genetic condition) and a Growth Hormone disorder meaning he needs daily injections. He is the happiest, liveliest, cheeky little man and a complete inspiration to me. How can I feel sorry for him, and all life has thrown at him, when he very rarely does.
Ethan’s story appears in much more detail within my book, for more information please visit www.vickyherbert.org.uk I would also love to hear from others affected by Hydrocephalus. If you don’t want to share here on the blog then please feel free to email me at admin@vickyherbert.org.uk
Also for more information on Hydrocephalus, please visit http://www.shinecharity.org.uk/ where you can access more details on the condition as well as the services they currently offer. Details of how to donate will also be on their site and I hope that anyone touched by Ethan’s experiences will find it in their hearts to do so. Without Charities like this, I have no idea where I would have turned, and it doesn’t bare thinking about.
Vicky Herbert - Heartbreak & Miracles 