Written by 9:00 am Baby & Toddler, Parenting

Craniosynostosis Shaped Her Little Girl’s Head, but Didn’t Change Her Big Heart

In December 2017, at just 19 months old, Baby Zia was diagnosed with craniosynostosis, a premature fusion of the skull that is supposed to gradually occur throughout a child’s first six years. This affected the shape of her head and face, causing her eyes to sit awkwardly on her facial bones. Without correction, her growing brain would eventually press against her skull. This would undoubtedly impact her development, not to mention endanger her life.

Today, four-year-old Zia is a healthy and cheerful child who inspires much pride and joy in her mum, public service officer with the Ministry of Home Affairs, Nur Asyikin Hamzah, 36, and her dad, art director Sharul Rizal Amir, 37. Her grateful mother shares the ups and downs in her baby girl’s life to date.

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Welcoming Baby Zia

“We were married for more than two years, so it was a good time to start a family. Finding out I was pregnant was exciting for the whole family as she was also the first grandchild. There was a lot of baby shopping and we even had her name picked out quite early in the pregnancy.

The pregnancy was mostly uneventful. I was healthy and active throughout and only had some morning sickness in the first trimester. I was a counsellor, and my office was on the fourth floor in a building where the elevators didn’t work. Climbing up and down between office and counselling sessions all day was not a problem until maybe my 33rd week, when I conceded defeat and requested for an office on the first floor.

Baby Zia and brother

Zia was a chill baby and looking back, pretty easy to handle, even for us first-time parents. She was content being in her stroller and was sleeping in her own cot by her 8th or 9th month. She rolled over, ate her first solids, took her first steps, said her first words — all at the milestone-appropriate times.

A rash on her left cheek, which persisted despite trying many different ointments, was perhaps the biggest health issue we faced. And there was one time she did not poop for about a week! But she was still being breastfed then, and we read that it was nothing to be concerned about. All in all, her first 18 months were healthy and happy ones.

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Life-changing Diagnosis

One day in her 19th month, Zia came down with a slight flu, so I took her to the clinic. When we entered the consultation room, the doctor confused us with another patient as Zia had similarly large eyes. I explained that we had previously consulted KKH and they had reassured us that it was not an indication of any sight issues. He responded that it may not be her eyes, but rather, the way they sat in her skull that could be causing the protruded look. He strongly advised that we have Zia checked and wrote us a referral letter to his ex-colleagues at NUH.

We saw a paediatrician at NUH, who, immediately after our consult, referred us to geneticist and paediatrician, Dr Denise Lim. Just from eye-balling Zia, she was confident that she had a condition called craniosynostosis. She made an urgent call to Associate Professor Lim Thiam Chye’s clinic to ask him to look at Zia.

We saw all three doctors in that same day. We were distraught and lost, not knowing how to help her. But I think we got through it by taking it one step at a time. Sharul and I told each other that no matter what Zia had, we would do whatever was required for her to continue being the amazing baby she was.

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Concurring with Dr Denise Lim’s initial diagnosis, Professor Lim scheduled a CT scan in the following month to confirm it. Dr Denise Lim also took some of Zia’s blood to test her DNA for Crouzon Syndrome genes. Both CT scan and DNA results came back within two weeks and were conclusive. The operation date was fixed for 30 January 2018, leaving us about three weeks to mentally prepare ourselves.

craniosynostosis - Baby Zia in NUH

Tough Times

The CT scan was a full-day inpatient procedure and proved to be a rough day. Seeing her being held down so that an IV line could be put in, keeping her occupied while waiting, feeding her medication to knock her out for the scan, and seeing her small body being rolled away. Those were extremely difficult moments for me as a mother. An enormous part of how I held myself together was my husband’s stoic and practical nature. I must applaud and thank him for that.

It didn’t help that when Zia’s surgery came around, I was 12 weeks pregnant with our second child. An hour before leaving to admit Zia ahead of her surgery the following morning, I started bleeding heavily. So instead of heading to NUH, Sharul rushed me to our gynae, who ordered immediate bed rest. This meant that I had to stay home while my husband and mother-in-law took Zia to the hospital for the biggest surgery that I have ever known anyone to have in my life.

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That was probably my lowest point — I didn’t know if I would see my baby girl alive again! Heartbroken, I cried profusely, thinking that it may be the last time I would see her as she was, if at all. To keep myself calm, I kept recalling Professor Lim repeatedly assuring us that it would be a straightforward operation.

Yet the description of the entire procedure had sounded truly scary. How could it not? It would involve cutting her scalp, peeling it off her skull, sawing through the bones, and then putting it all back together with some foreign materials we could only imagine from Professor Lim’s description. And any surgery, much less one so delicate on one so little, carries the risk of complications.

craniosynostosis - Baby Zia and mum

The Longest Day

The day of the surgery felt never-ending. We waited at home. Some friends and family came over to occupy me and kept me from imagining the worst. I remember thinking how surreal it was that at the same time, our baby was on an operating table, with her head being sliced open.

At around 7pm that evening, we headed back to NUH and were waiting at the Coffee Bean outlet when we got the call to inform us that the operation was over and that we could receive Zia at the operating theatre. We were eager to see her but afraid of how she would look with the tubes and wires and bandages. I was also a little sad that she would be bald, as we had not cut her hair since birth.

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I remember feeling surprised at how good she looked, clean, and resting peacefully as they rolled her out of the operating theatre. Yes, it was difficult to see her tiny body lying so still on that huge gurney, hooked up to all the tubes and wires. But most of all, I felt immense relief for the first time since her initial diagnosis months before.

The operation had been almost 12 hours long, requiring the expertise of three departments: Neurology, Paediatrics, and Aesthetics. When the operating theatre door opened, at least 15 surgeons and nurses walked out, with four of them wheeling her gurney. The gravity of the situation struck me — Professor Lim’s assurances notwithstanding, the surgery had been no simple feat. We could have lost her.

Baby Zia and family

Bouncing Back

Zia spent the next four days in the NICU, which took excellent care of her. She was loopy for a few days and would stare at us with deadpan eyes. This was a bit worrying, but the doctors reassured us that it was just the pain meds at work. It was tough leaving her each night, but every morning when we returned, the night duty nurses had only positive feedback. They removed the breathing tubes quite quickly and it didn’t take long before she started drinking milk on her own.

Zia’s first steps in the initial days back home were shaky for all of us. We hovered around her but also refrained from being overly panicky if she swayed. We didn’t want our over-protectiveness to affect her confidence to move and adapt to her new head size. To compensate, I would wheel her around in the stroller even at home, so there would be less chance of her falling and hitting her head or knocking into sharp edges of furniture. We also allowed her to sleep in our bed. This meant that all the sleep training we had gone through prior to the surgery went out the window!

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About 10 days after Zia was discharged, we returned for a follow-up with Professor Lim to remove the bandage. The scar looked so angry and raw, but it was healing nicely, and subsequent reviews were six months apart. We visited NUH several times to see Professor Lim, and sometimes the geneticist, paediatrician, and neurosurgeon too.

To date, her doctors have said again and again that the surgery was a success. They believe the rate of her head growth and the shape it has formed indicate that Zia is unlikely to require additional surgeries. We’ve kept a close eye on her development, but every passing moment assures us that Zia is totally normal. She is a regular kid and still the same sweet girl we know and love.

Baby Zia goes to school

Going to School!

Zia recovered very quickly and within a month, she was already running around. So just three months later, we enrolled her at White Lodge preschool. At that time, her hair was still growing out and her scar was still quite visible. While some other schools were concerned about their ability to care for Zia, White Lodge was confident they could.

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We were concerned about other children playing rough, but we also did not want her to miss out on the experiences we had planned for her before the diagnosis. In fact, enabling Zia to experience life as normally as possible has become our guiding principle.

She was a champion that first day. Zia eagerly joined her class and I sneaked away. But when we picked her up four hours later, she was crying. The teacher said it was only because she started seeing her friends leaving with their parents! We got her a toy shark as reward for being such a good girl on her first day at school.

Big-hearted Little Girl

Big eyes she may have, but my little Zia is also big of heart. Perceptive, observant, and compassionate, she often helps out at school, her teachers report. She also shares her toys freely with her friends and her younger brother. Exuding an openness in her personality, she is curious about everything, although she is also very dreamy. It’s cute but can also be exasperating when she takes her own sweet time when we need her to hurry!

For me, the whole experience has changed my priorities in parenting and life in general. I used to be pedantic — strict bedtimes, sleep training, sanitising every other minute. I’m way more relaxed now. I think the whole ordeal made me realise that there were more important things to focus on. Things like her cognitive development and nurturing her to have a positive self-concept now outrank grubby hands or staying up an extra hour.

Zia doesn’t yet know about her craniosynostosis, or that she had an operation. She’s seen pictures of her time in the hospital, but I don’t think she connects those photos with her. We will speak to her about it when she can understand better, but the last thing we want is for her to view her condition as something that would hold her back. We hope she grows to be a confident woman and continues being big-hearted and caring to those around her.”

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Baby Zia’s surgery involved the use of Osteomesh, a custom 3D-printed gauze-like structure that helps surgeons in patients’ skull and facial reconstruction. Its porous nature allows blood vessels to grow from within and guides regenerative cells that integrate into the patient’s own bone tissue, thus expediting the natural bone-healing process. After implantation, Osteomesh dissolves into carbon dioxide and water in the body over an 18- to 24-month period.

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