Watching Harry scooting up and down our street with his best friend Bella is magical.
You would never guess that the first year of Harry’s life was a whirlwind of blue-light emergencies, brain surgeries, and unimaginable fear.
You would never think that, under his mop of unruly blonde hair is a shunt – a device which drains the fluid from his brain, and keeps him alive.
Harry is my fourth child, and my pregnancy with him was actually my easiest. I had mild gestational diabetes (GD), which was controlled by diet, but other than that I actually glowed.
While I was pregnant, I was scanned every four weeks from 20 weeks onwards, which is common for pregnant people with GD.
At 36 weeks, my husband and I walked into the scan room. We were calm, expecting a routine appointment. However, about five minutes in, the sonographer went quiet. She then said she needed to get someone else, so we waited.
Another lady came in, said nothing and then, after what felt like forever, she told us that she could see a ‘loss of brain component’ and that there was an abnormality on the scan.
We were both utterly distraught. They said that they didn’t know what it meant at that point but we would need to be referred urgently to a specialist hospital.
To say we were terrified does not begin to cover it.
After several more scans, it was discovered that our baby had a very large arachnoid cyst. An arachnoid cyst is a fluid-filled sac that develops on one of the three membranes that cover the brain and spine (the arachnoid membrane).
Most arachnoid cysts are present at birth, and while many do not cause any symptoms, they can sometimes lead to headaches, nausea and vomiting, vision problems, problems with balance/walking, seizures and in some cases, hydrocephalus.
The medical team decided to wait two weeks, and then deliver our little boy by C-section. Scans showed that other than the head, he was developing normally so they wanted to wait until his lungs were fully matured before delivery. They needed him to be as strong as possible to face the possible challenges ahead.
We really didn’t know what the future held and, as the medics admitted themselves, neither did they. So, painstakingly, we waited two weeks until the C-section.
When the day finally came, baby Harry defied all expectations. Despite being born in a crowded operating theatre, with a paediatric crash team on standby, he came out pink and screaming. He was checked over and, at just two days old, he had his first of many MRI scans.
The MRI showed that Harry’s arachnoid cyst was actually taking up about a quarter of his brain.
However, he seemed to be doing well despite all odds and, five days later, we were allowed to go home to begin life with our ‘miracle baby’.
Harry was monitored carefully. All babies in the UK should have a head circumference measurement taken at birth, and then again at 6/8 weeks, but Harry’s head was measured weekly.
It quickly became apparent that his head circumference was jumping exponentially. Harry was also clearly distressed and screamed constantly.
At six weeks old, Harry had another MRI scan. The radiographer said they could see excess fluid in his brain. The build-up can be fatal if left untreated and so, at just eight weeks old, we handed our tiny son over to a neurosurgeon for his first brain surgery.
It was only at this point that we were told that Harry had hydrocephalus. I had never heard of the condition, so I turned to Google. Then my world stopped turning.
Roughly translated: ‘hydro’ means water and ‘cephalus’ means head. Sometimes known as ‘water on the brain’, hydrocephalus is a condition where excess fluid builds up inside the skull and puts pressure on the brain.
It can lead to brain damage and can be fatal if left untreated. Hydrocephalus is more common than you might think, with an estimated 1 in every 770 children developing the condition each year.
We learned that Harry would need a shunt to manage his hydrocephalus, and to keep him alive. A shunt is a thin, plastic tube that is placed in the fluid filled sacs (or ventricles) within the brain, and drains the excess fluid away, to another part of the body (such as the abdomen, heart, or lungs), where it is reabsorbed.
Most shunts will have a one-way valve, to ensure the fluid flows in the right direction e.g, away from the brain.
Harry’s first shunt was inserted during his first brain surgery. By doing so, it helped to regulate the amount of pressure being put on his brain by the extra fluid his body was producing.
Shunts are great devices, but they aren’t a cure for hydrocephalus, and they can go wrong. In fact, 50% of shunts will fail within the first two years of insertion. In Harry’s case, it took just three months for his shunt to fail.
It can happen for many reasons including blockages (of the tubing and/or valve), infection, fracture/disconnection of the tubing, overdrainage, migration, and improper placement.
The only way to treat a shunt failure, which in many cases, is a life-threatening emergency, is brain surgery. If the shunt failure is left untreated, the excess fluid will continue to build up in the brain. This can be fatal.
Noticing when a shunt is not functioning properly is incredibly difficult. The signs of shunt failure can sometimes mimic the symptoms of normal childhood illnesses e.g., tiredness, grumpiness – which parent doesn’t see those symptoms on a regular basis? We have been known to rush him to A&E only to realise he has a tummy bug. But, we can’t afford to take chances.
Harry’s shunt has been blocked twice. On the first occasion, it became dislodged, and on the second his scar became infected, requiring further surgery. In Harry’s case, doctors noticed a rapid jump in his head growth, he had visible scalp veins and was very unsettled.
Harry’s hydrocephalus was found early and, for this, I will be forever grateful. Despite having to undergo four brain surgeries in four years, he is doing remarkably well. However, we know of many families who are not so lucky.
If we had not had scans due to my gestational diabetes, we probably wouldn’t have realised anything was wrong until Harry had been born and his symptoms had become severe.
By this time, he may well have suffered damage to his brain as a result of his hydrocephalus being left untreated.
Research has shown that the key to early diagnosis for many children is routine measurements of head circumference, within the first year of life. When a child has hydrocephalus, they often have a larger head than normal for their age range, and/or a head circumference that is growing rapidly when plotted on a growth chart (usually documented in a child’s health record or ‘red book’).
Head circumference is therefore a key indicator that something is wrong. It’s vital that the newborn and 6/8 week checks include babies’ heads being measured.
Unfortunately, some children are only referred for specialist assessment and care many months after the initial onset of symptoms of hydrocephalus. Tragically, the later the diagnosis is made, the more challenging life is likely to be for the child and their parents.
The hard part is that many people are unaware of the significance of head measurement. I was, and Harry is my fourth child!
Harry’s diagnosis was isolating. He didn’t look ill, so few people really understood the gravity of his condition. We quickly learned that hydrocephalus can be treated but not cured.
I wanted to make life better for all children with the condition including, of course, Harry. We therefore founded Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) to do just that.
I’m supported by an amazing team, and together we work tirelessly to raise awareness of hydrocephalus, fund front-line workers so that they can increase their knowledge of the condition, and connect families to reduce isolation. Our long-term goal is to make a significant contribution to research so alternative and less invasive treatments can be found.
Symptoms of the condition in babies include an unusually large head, which can lead to a baby’s head being far too big to fit hats for their age group and/or parents not being able to get the baby’s head through a Babygro (for their age range).
Harry’s future is bright. However, the reality is that it could change. His shunt could block or become infected tonight, resulting in more invasive brain surgery and the risk of brain damage; or, he could go years with no complications.
Sometimes, the uncertainty is the hardest part.
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