The joys and challenges of raising a child with albinism

Diversity is what makes humanity interesting and beautiful. As modern parents, we receive influence from our parents, grandparents, peers and the entire internet at our disposal; there is often conflicting advice on how to raise a kid who is kind, confident and successful. However, one central theme has drawn much attention, and that is to teach our children about diversity at a very young age. With the increasing influence of the internet, affordable and accessible travel, connected communities and people, there is a need to create diverse environment where everyone is represented, respected and comfortable.

We’ve reached out to Sarah, who has two beautiful daughters, Savannah and Marissa. With gorgeous silver hair and porcelain skin, her elder daughter Savannah has albinism. Albinism means she has an absence of pigment in her skin, hair and eyes, and sensitivity to light. Sarah shares with us her thoughts on the joys and challenges of what it is like to raise a child with albinism.

Please tell us a little bit about yourself

I'm Sarah, a public affairs professional and I'm married to Allen, a marketing professional. We have two beautiful daughters, Savannah and Marissa. Savannah was born in 2018 with oculocutaneous albinism, much to our surprise. Marissa was born almost exactly two years later in 2020, and she does not have albinism. We see it as having the best of both worlds and are looking forward to countless adventures as a family of four.

Sarah with her family pictured above with her beautiful daughters, Savannah and Marissa

Your elder daughter Savannah has albinism, can you tell us more about her birth story?

After a 6 hour labour, Savannah's beautiful head of white hair emerged. It may have been pure exhaustion from an overnight labour, or perhaps it was divine intervention, but both Allen and I had a wave of calm over us even when we knew Savannah was different. That full head of pure white hair and the translucent grey eyes when she first opened them for us were unmistakably unique. Our doctor and the midwives didn't say anything, I guess it's against their policy to declare any birth anomalies. They told us the pediatrician would be with us in a while to check on the baby. At that point, we thought a pediatrician visit to the birth suite was just routine, so we didn't think twice about it.

While waiting, I looked over at Allen and he knew what I was about to ask. Before I could even say anything, he said "there's a reason we're Savannah's parents". And that was all it took to convince me that our baby girl was perfect the way she is. Deep inside I knew there may be challenges we'll face with the diagnosis, but it didn't matter. She was still our perfect angel baby.

The pediatrician arrived within an hour or so, and flat out told us "your baby has oculocutaneous albinism". She suggested we go for a session of genetic counselling to help us understand why and how this happens. We thought about it for a few days, but decided we didn't need counselling as it was a miracle to us. In fact, when we got pregnant with Marissa, a big part of both of us were hoping she would have albinism too, because it is such a rare but beautiful occurrence.

A snapshot of Sarah's family with her darling Savannah

As a mother of a kid with albinism, what has your journey been like? What were you most unprepared for?

I've always been a compulsive "prepper" having to prepare myself mentally and physically for anything new that I would embark on. It was no different when Savannah was born. I did hours of research on albinism, linked up with fellow moms of children with albinism, reached out to the Instagram community to find more people with experience and even wrote to probably one of the most famous women with albinism Connie Chiu (in case you're wondering, she did write back with the most encouraging words to a first time mom of a kid with albinism). 

Savannah's type of albinism means that she has no pigment in her hair, eyes and skin. The hair was the easiest of overcome since it is purely a color difference, and those who know me know that I've always experimented with multi colored hair, having had all kinds of colored hair myself, so hair color to me was no big deal at all. 

Her skin lacking melanin took us a while to figure out the best way to protect it from harmful UV rays. In fact, we're still learning as we go along. We introduced sunscreen to Savannah as a new born and she is now used to putting on sunscreen anytime we leave the house. Allen is a lot more conscious about exposed skin, so he ensures she's covered up with clothes when we know we'll be exposed to sunlight. The challenge with that is, Savannah sweats easily and absolutely hates feeling warm. So long sleeves and long pants in the hot Singapore weather is pretty much a nightmare for her. Our solution? We spend most time indoors. Lucky for us, we live in a cosmopolitan city and most activities are indoors anyway so we don't feel like we miss out on much.

Savannah's eyes are our biggest concern right now. We know that her vision is poor as she doesn't seem to be able to see things that are a distance away. Her close vision seems alright as she's able to grab even small objects that was within her reach. Her ophthalmologist has diagnosed her with mild far-sightedness and she wears glasses to help her. What we also know is that light plays a big part in how well she can see.

Under bright daylight, or if there's a glare (for example from a window), she has to squint in order to see. For now, we don't worry too much but we're mentally prepared for the day she can tell us what she can and cannot see. When that day comes, we'll take it one step at a time and help her out as much as we can. The good news is, there's so much technology and tools available these days to help people with low vision to overcome their challenges.

Pretty in pink in our strawberries and cream print

From your experience, what are some of the most common misconceptions of albinism? What were some of the challenges you have faced?

We live in a conservative society in Singapore. The general mindset, especially that of the baby boomer generation (the approximate age group of Savannah's grandparents), is still very traditional. Going out in public garners stares, finger pointing and whispers behind our backs. It was challenging at the start as we faced public scrutiny, but we grew a thicker skin and now when people stare, we just beam back with a big smile and wave, so then they tend to feel silly having staring so openly towards us. 

One time, when we were in a shop, a group of 3 adults in their 60s followed us through aisles speaking in the Hokkien dialect (in which both Allen and I are fluent in, but they probably did not realize that) speculating if we had dyed Savannah's hair. We ignored them and continued with our shopping, but I was laughing away at their banter. "It's definitely dyed white!" "I'm sure it's natural, no one can dye hair that white" "The parents are crazy to dye their baby's hair!".

We've reached a point where we just shrug off the negativity around us. I must say though, the millennial generation and those who are currently in their teenage years, are so much more open and accepting towards diversity. We've had encounters with young adults in public who have gushed over how beautiful and unique Savannah is, we've had some approach us to say hi to her, and some who even want to take photos with her. I'm proud of the society that Singapore's youth is transforming, and am so very pleased of their accepting minds. It makes me less worried for Savannah as she grows up with this generation of people. 

What worries me is the brainwashing her peers may be exposed to from their grandparents who may still carry a conservative mindset. They tend to think she's contagious, sickly or with special needs. We hope to inculcate a strong mindset within Savannah to face these negative ideals about her, and we'll teach her to educate instead of retaliate. She's a little too young to truly understand this now, but we tell her every day that she is unique and a blessing. 

How do you respond to others' curiosity about your kid, and in turn how have you taught Savannah to respond?

I encourage and welcome questions from anyone about Savannah and albinism. We've had some people approach us in public to ask if her hair is natural, one or two people have even just flat out asked if she's albino. I'm overjoyed when we get asked because it gives me the opportunity to educate and raise awareness about albinism. I just wish more people who come out and ask us about it, rather than form their own judgments and whisper behind our backs. 

When we get approached, I tell Savannah to say hello to the auntie/uncle/gorgor/jiejie and have her a part of the conversation so that she also learns how we respond and can do the same when she's old enough to do so. 

For Savannah's enrolment into preschool, we set up a meeting with her class teachers and their principal to tell them about albinism and how they can help her if she needs assistance. We're lucky she's in a very inclusive, diverse preschool where the kids are international so having different colored hair and eyes is nothing out of the ordinary.

When she reaches her primary school age, we're prepared to send her to an international school as we feel she will feel more welcome and they will have better resources to aid her in case she has low vision. We're concerned the local schools in Singapore will view her as a child with special needs, especially if she has low vision, she may be subjected to scrutiny like when we go out in public.

Allen and I feel that in our role as her parents, we can only do what we can within our control to protect her. We may not be able to protect her from getting approached and ridiculed, but we'll teach her to respond with a positive, confident attitude. And however we can help her, like sending her to a school that will embrace her for who she is, we will be ready to do so.

The adorable Savannah in our reversible organic Giraffes and Strawberries dress

Some people with albinism have varying comfort levels with using the term. What are you most comfortable with using?

We actually don't have any issues with the terms associated - albinism, albino and we heard "albiyes" once which we now love using as a term to describe Savannah. 

What advice would you give other parents who are also in the same shoes?

Hit me up! I've been desperately trying to form a local community, or even a regional one, for people with albinism but the conservative society means people tend to shy away from their differences. I encourage and welcome anyone who knows anyone with albinism to reach out and let's form an amazing secret society! Just kidding about the secret society. We'll be a loud and proud community.

That aside, my advice for any parents who get a surprise when their babies are born with an anomaly is to embrace it wholeheartedly. When you embrace and accept the reality, it is so much easier to learn about the condition and find ways to adapt to it. A never-fail recipe of love and care goes a long way.

A big THANK YOU to Sarah for her heartfelt story, if you have any further questions or would like to get in touch with her, please reach out to her on Instagram @savannahevepua.