September 22, 2023


The finest in babby

I’m on a mission to make sure every parent measures their baby’s head

8 min read

Baby Harry Harry's Hat

To say we ended up terrified does not start out to cover it (Picture: Caroline Thwaites)

Watching Harry scooting up and down our avenue with his most effective buddy Bella is magical. 

You would by no means guess that the 1st calendar year of Harry’s lifetime was a whirlwind of blue-gentle emergencies, mind surgeries, and unimaginable concern. 

You would in no way feel that, beneath his mop of unruly blonde hair is a shunt – a unit which drains the fluid from his brain, and keeps him alive. 

Harry is my fourth youngster, and my being pregnant with him was in fact my easiest. I had gentle gestational diabetic issues (GD), which was controlled by diet, but other than that I actually glowed. 

Even though I was expecting, I was scanned just about every 4 months from 20 weeks onwards, which is typical for expecting persons with GD.  

At 36 weeks, my spouse and I walked into the scan place. We were being serene, expecting a routine appointment. Even so, about five minutes in, the sonographer went tranquil. She then said she wanted to get someone else, so we waited.  

Yet another girl arrived in, mentioned almost nothing and then, right after what felt like forever, she told us that she could see a ‘loss of mind component’ and that there was an abnormality on the scan.

We were being both of those totally distraught. They reported that they did not know what it meant at that level but we would require to be referred urgently to a specialist hospital.  

You would never believe that, beneath his mop of unruly blonde hair is a shunt (Photograph: Caroline Thwaites)

To say we have been terrified does not start out to protect it.

Right after many additional scans, it was uncovered that our toddler had a really significant arachnoid cyst. An arachnoid cyst is a fluid-stuffed sac that develops on a single of the 3 membranes that protect the brain and spine (the arachnoid membrane).

Most arachnoid cysts are existing at birth, and though several do not lead to any signs and symptoms, they can sometimes lead to headaches, nausea and vomiting, eyesight complications, difficulties with harmony/going for walks, seizures and in some cases, hydrocephalus.

The professional medical workforce resolved to hold out two weeks, and then deliver our minor boy by C-section.  Scans confirmed that other than the head, he was developing typically so they desired to wait around right until his lungs were entirely matured in advance of delivery. They wanted him to be as strong as achievable to facial area the feasible troubles in advance.

We actually did not know what the foreseeable future held and, as the medics admitted them selves, neither did they. So, painstakingly, we waited two months right up until the C-area.

When the working day eventually came, baby Harry defied all expectations. Inspite of staying born in a crowded operating theatre, with a paediatric crash group on standby, he arrived out pink and screaming. He was checked above and, at just two days aged, he experienced his very first of several MRI scans.  

The MRI showed that Harry’s arachnoid cyst was basically having up about a quarter of his mind.  

Nonetheless, he seemed to be accomplishing effectively in spite of all odds and, 5 days later, we were allowed to go dwelling to commence life with our ‘miracle baby’. 

Harry was monitored thoroughly. All infants in the British isles should really have a head circumference measurement taken at birth, and then once more at 6/8 weeks, but Harry’s head was measured weekly. 

I wished to make existence superior for all children with the problem together with, of study course, Harry (Photograph: Caroline Thwaites)

It quickly became obvious that his head circumference was jumping exponentially. Harry was also obviously distressed and screamed constantly. 

At six months previous, Harry had one more MRI scan. The radiographer said they could see excessive fluid in his mind. The create-up can be deadly if remaining untreated and so, at just 8 months old, we handed our tiny son more than to a neurosurgeon for his to start with mind surgery. 

It was only at this point that we were instructed that Harry had hydrocephalus. I had in no way listened to of the condition, so I turned to Google. Then my earth stopped turning. 

About translated: ‘hydro’ indicates h2o and ‘cephalus’ indicates head. Often recognized as ‘water on the brain’, hydrocephalus is a ailment where by extra fluid builds up inside the skull and puts pressure on the brain.  

It can lead to mind destruction and can be fatal if still left untreated. Hydrocephalus is much more common than you might consider, with an estimated 1 in just about every 770  little ones developing the ailment every single 12 months.  

We realized that Harry would have to have a shunt to handle his hydrocephalus, and to preserve him alive. A shunt is a slim, plastic tube that is positioned in the fluid stuffed sacs (or ventricles) inside of the mind, and drains the excessive fluid absent, to a further portion of the entire body (these as the stomach, heart, or lungs), where by it is reabsorbed.

Most shunts will have a just one-way valve, to ensure the fluid flows in the correct path e.g, absent from the brain.

Harry’s 1st shunt was inserted through his 1st mind surgical treatment. By executing so, it assisted to regulate the sum of force being put on his brain by the excess fluid his physique was producing. 

Harry’s hydrocephalus was uncovered early and, for this, I will be endlessly grateful (Picture: Caroline Thwaites)

Shunts are terrific products, but they aren’t a heal for hydrocephalus, and they can go completely wrong.  In point, 50% of shunts will fail within just the initially two a long time of insertion. In Harry’s scenario, it took just 3 months for his shunt to fall short. 

It can take place for several good reasons which include 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 lots of conditions, is a existence-threatening crisis, is mind medical procedures. If the shunt failure is remaining untreated, the excess fluid will carry on to build up in the mind. This can be deadly. 

Noticing when a shunt is not working properly is very hard. The signals of shunt failure can in some cases mimic the indications of usual childhood health problems e.g., tiredness, grumpiness – which mother or father does not see all those signs on a typical basis? We have been recognized to hurry him to A&E only to realise he has a tummy bug. But, we simply cannot manage to acquire odds.

Harry’s shunt has been blocked 2 times. On the initially event, it grew to become dislodged, and on the second his scar turned contaminated, necessitating even more surgery. In Harry’s scenario, health professionals found a immediate leap in his head advancement, he experienced seen scalp veins and was pretty unsettled.  

Harry’s hydrocephalus was uncovered early and, for this, I will be permanently grateful. In spite of obtaining to go through 4 brain surgical procedures in four a long time, he is accomplishing remarkably perfectly. On the other hand, we know of quite a few family members who are not so fortunate. 

Harry’s analysis was isolating (Photograph: Caroline Thwaites)

If we had not had scans thanks to my gestational diabetes, we almost certainly wouldn’t have realised anything at all was wrong right up until Harry had been born and his indications experienced come to be intense.

By this time, he may perhaps perfectly have experienced hurt to his mind as a outcome of his hydrocephalus becoming left untreated. 

Study has shown that the critical to early diagnosis for a lot of youngsters is regimen measurements of head circumference, inside the very first year of daily life. When a kid has hydrocephalus, they usually have a greater head than normal for their age assortment, and/or a head circumference that is rising fast when plotted on a growth chart (typically documented in a child’s well being file or ‘red book’). 

Head circumference is therefore a crucial indicator that some thing is wrong. It’s crucial that the newborn and 6/8 7 days checks consist of babies’ heads remaining measured.

Sad to say, some young children are only referred for specialist evaluation and care quite a few months immediately after the initial onset of symptoms of hydrocephalus. Tragically, the later the prognosis is created, the additional complicated existence is probable to be for the youngster and their parents.  

The hard section is that several men and women are unaware of the importance of head measurement. I was, and Harry is my fourth boy or girl!  

Harry’s prognosis was isolating. He didn’t seem sick, so couple people today genuinely recognized the gravity of his affliction. We quickly learned that hydrocephalus can be addressed but not remedied.  

I wished to make lifestyle better for all little ones with the affliction such as, of program, Harry. We thus founded Harry’s Hydrocephalus Consciousness Belief  (Harry’s HAT) to do just that.  

I’m supported by an astounding crew, and collectively we do the job tirelessly to raise recognition of hydrocephalus, fund entrance-line personnel so that they can increase their knowledge of the problem, and connect people to minimize isolation. Our very long-term aim is to make a major contribution to exploration so different and fewer invasive remedies can be uncovered.  

Indicators of the ailment in infants incorporate an unusually large head, which can guide to a baby’s head staying much much too huge to in good shape hats for their age group and/or mom and dad not becoming ready to get the baby’s head via a Babygro (for their age vary). 

Harry’s future is vibrant. However, the truth is that it could adjust. His shunt could block or develop into infected tonight, ensuing in a lot more invasive brain surgical procedures and the risk of mind injury or, he could go many years with no complications.  

At times, the uncertainty is the most difficult element.

Do you have a story you’d like to share? Get in contact by emailing [email protected] isles. 

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