Cuddling my four-month-son Harry, I carefully tried placing a sun hat on his head. But it wouldn’t go on.

“It’s too small,’’ I sighed to my partner, Charlie Phipps. It wasn’t the first time we’d had this problem.

When Harry was born in January 2013, we’d noticed that his head circumference was larger than most newborns. But we were so thrilled with our baby that we didn’t think too much about it. The doctors didn’t mention it and we had seen and heard of babies having different shaped heads – even cone-shaped ones – and thought it would right itself eventually. As far as Charlie, 26, and I were concerned, Harry was a healthy, happy little baby.

Although the shape of his head was long and narrow, he had a ridge at the top of his forehead, which meant that hats for his age group never fitted. Now, even though he was still so little, I had to put him in hats for babies aged 12-18 months instead. And then one day, Mum came over to help me bathe Harry and mentioned it. “He’s got an unusual skull shape,’’ she frowned, washing shampoo out of his hair.

A pulse of fear shot through me. So it was that noticeable, I thought. Harry was developing normally, so I pushed my worries away. Then, one evening a month later, in October 2013, he started being sick and developed a dangerously high temperature.

We rushed him to Lister Hospital near our home in Stevenage, UK, where he was diagnosed with gastroenteritis. “He’ll have to stay in overnight,” the doctor told us. We stayed by his bed, and were relieved when he perked up thanks to the medicine they gave him. “You can take him home soon,” the doctor said. “But I think you should have Harry’s skull measured. I’ve noticed it’s an unusual shape.” Now I was really scared. Was there something seriously wrong? I made an appointment with a paediatric neurosurgeon, who examined and measured Harry’s head.

“I don’t think that there’s any cause for concern,’’ he smiled. Relief rushed through me.

But back home, a few hours later, the phone rang and it was the specialist. He said he had reconsidered his evaluation and wanted to tell us more.

“I think that your son has a skull defect,’’ he said. Shocked, we were told to take him for a scan the following week. I tried not to panic but the scan confirmed that our baby had Sagittal Craniosynostosis, which affects an estimated one in every 3,000 children.

The doctor explained that the fibrous sutures in Harry’s skull had fused prematurely, turning into bone and causing his skull to acquire an abnormal shape. If unchecked, it could also lead to visual problems, sleep impairment, difficulty in eating and poor mental development. “Our little boy,” I gasped. He went on to explain that three out of every four cases affects boys. “If nothing is done now, Harry’s head may end up looking like a rugby ball when he’s older,’’ the specialist said.

It was so much to take in, but it was serious and we needed to make an urgent decision. While the condition wasn’t fatal in itself, the pressure build-up in the brain due to the skull bones growing abnormally could lead to complications such as breathing problems, severe headaches and blurred vision.

The only option was an operation, called a full calvarial remodelling, to correct Harry’s skull shape. It meant literally smashing up his skull and piecing it back together into the right shape. I could feel my nails digging into my palms, I was clenching my fists in shock so much. How could we do that to our baby? But then what if something awful happened because we hadn’t gone through with it? I held back tears, trying to take in what the doctor was saying. “There is a small risk to the surgery,” he said, explaining that Harry might not make it through the operation.

It was down to Charlie and I to decide whether to go ahead or not. It was an impossible choice. I was Harry’s mum – it was my job to love and protect him. All my instincts told me to hug him and keep him safe. Of course, I didn’t want him to have to go through any pain. But we had 
to do the right thing for our son.

“Why has this happened to our baby?’’ I sobbed in Charlie’s arms, back home.

We were both devastated. But seeing Harry playing with his toys, crawling and giggling, helped me to decide. I had to do the right thing for Harry – to give him a chance at the best future.

We were referred to Great Ormond Street Hospital and had our first appointment in January 2014 when Harry had just turned one.

The doctors there told us the operation was the best option for Harry. But I was still panicking inside about the minor element of risk associated with the surgery. It was such a big decision. But we knew that delaying the op could lead to complications, which could be fatal.

“What if something goes wrong during the op?’’ I fretted. Charlie 
hugged me.

“It won’t,” he reassured me. “And we can’t leave him like that.”

After a lot of discussions between Charlie and me and after several talks with the doctors, we reached a decision a fortnight later. We had to give Harry the best possible chance of having a trouble-free future. Having the operation now would be so much better than rectifying the problem when he was older. 

We agreed to let him have the operation. In the days running up 
to the surgery, we tried spending as much time as we could with him – playing with him and cuddling him.

On the morning of March 12, when Harry was 14 months old, we took him down to the op theatre. “Love you, darling,’’ I murmured, as the anaesthetist put a mask over Harry’s face and he drifted off to sleep. 
It was the hardest thing we’d ever had to do, walking away from our little boy as he was taken away for major surgery. The fear and apprehension that something might go wrong weighed heavily on us. Time dragged as we waited.

During the seven-hour procedure, the surgeons sliced open Harry’s scalp from ear to ear, broke his skull into pieces and, in their words “put it back together like a jigsaw puzzle” to make it more symmetrical.

“How much longer?” I worried, pacing the corridors. Finally we got the call to say that he was out of surgery. “The operation has gone well,” the surgeon told us.

But nothing could have prepared us for the sight of our baby lying in a bed in the high-dependency unit, surrounded by tubes.

“You can give him a cuddle,’’ the nurse smiled.

I felt nervous picking him up. He seemed so fragile. His head was swathed in bandages and he also had wires and sensors attached to his little body to monitor his vital signs.

“My brave boy,’’ I whispered, kissing his cheek, as he rested his head sleepily on my shoulder. We didn’t leave his bedside all night and he was monitored constantly by medical staff.

The following day, Harry’s head swelled so much, 
he couldn’t open his eyes. “He doesn’t look like our little boy anymore,’’ I cried to Charlie. But the doctors reassured us the swelling was normal. 

But it was upsetting to see him looking so little and broken. Luckily he didn’t seem to be in pain, and just wanted cuddles when he woke up. He was a strong little boy and soon rallied. The operation had been a success, the doctors said, and by day three, Harry was able to sit up and was smiling. He even unravelled the bandage from around his head.

I winced when I saw his wound. It ran from one side of his head to the other with stitches threaded through it. “You are a brave boy,” I said, kissing him. But of course, Harry was totally unaware. He was absolutely fine eating, playing and sleeping as usual, despite his bruise and swollen eye. Worried in case Harry got upset when his head was re-bandaged, Charlie suggested that we also put little bandages around his teddy bears’ heads. Harry couldn’t stop grinning, and playing with them.

And even though his head and eyes were swollen we could see that the shape was already much better – round instead of long and narrow. The ridge had gone too.

After five days in hospital Harry was discharged. It was nerve-wracking being back home. We were so worried that Harry would fall over and bang his head or bump into things. So we watched him all the time, but he was fine.

His scar was noticeable, and at first strangers stared at him when we went out, which upset me a bit. But Harry didn’t even notice. Luckily his hair grew back quickly and covered all the sutures. Now, more than six months after his operation, the swelling has gone down and his blond hair has grown over the scar, which has started to fade.

Sagittal Craniosynostosis can cause developmental problems, but Harry seems to be developing normally. He toddles around and has started to speak.

Although there is a chance that he may develop more problems in the future – like headaches and vision troubles – if the skull abnormality starts to grow back, we are not worrying about it now. Regular check-ups until he reaches adulthood will help monitor his progress – and we’re hopeful that his health problems are in the past.

Doctors have said – after conducting tests – Harry’s condition wasn’t caused by a syndrome, and it’s unlikely that it’s a genetic issue. But just in case, we’re having tests to determine whether any future children that we have will be at risk.

Harry’s skull still feels slightly bumpy under his scalp, where it’s still knitting back together, but his head is now the perfect shape.

I’ve even been able to buy him hats that are the right size for his age. His favourite is a little straw trilby, which 
he wears all 
the time.

“You look so sweet in your hat,” I tell him.

He’s bounced back amazingly from his ordeal. 
We couldn’t be prouder of our brave little boy. 

Amy Wilson, 26, lives in Shefford, Bedfordshire, UK.