“Untreated jaundice resulted in my son’s cerebral palsy” – SG Mum Living In LA

“The grief and guilt is overwhelming because he was born healthy and Kernicterus is easily preventable. We always worry about not doing enough for our son. We are working with therapists to help us cope.”

Singaporean mum of one, Chloe Happ moved to the US and agreed to getting married within four days of meeting her husband-to-be in person. She now lives in LA with her husband Tom, an indie game developer from New York and their son, Alastair. Chloe shares how Alastair is the third of our four pregnancies and the only surviving one who was born to term. At birth, Alastair was completely healthy but Chloe says that due to malpractice involving newborn jaundice, he’s now quadriplegic, deaf, non-verbal and suffers from seizures.

We chat with Chloe about how she knew to trust her instincts and start a new life abroad after only four days of meeting Tom, plus what life’s like in LA and how she navigates parenting a child with cerebral palsy (from building him his own resort-style home to enabling him to experience indoor skydiving and surfing!).

Click here to read about other Overseas Singaporean mamas!

When did you move to LA and what were the reasons you decided to move there?

We currently live in LA having moved here in 2019 from Las Vegas, Nevada. We chose LA for our son’s healthcare and educational needs as Nevada wasn’t equipped to handle children like him. I left Singapore for Las Vegas in 2013 after a very short courtship with my husband (four days before he proposed). I took a few months to hand over my portfolio at my dream job then gave up my life in Singapore.

Hold up! Your husband proposed after just 4 days? How did you meet and how did you know to say yes and move across the world after such a short time knowing him?

Tom and I met on OkCupid! We each answered a few hundred questions on the site and had over 90% compatibility match – the algorithm works if you answer truthfully as many questions as possible. He flew to Singapore to see me after chatting online for a few months and within four days of meeting me in person, he managed to ask my mother for permission before asking me to marry him when we were in a resort in Batam!

On my part, I’ve kissed enough frogs to know a good guy when I see one and with my boss’s reassurance that he’d keep my job open for me, I thought I would just go back home to Singapore if it didn’t work out. I was always a “let’s do it” woman and I would try almost anything once if given the chance. Ask my friends and family, they’d probably say this was definitely on brand for me. Nobody was really surprised. For Tom though, it was totally out of character. He has always been and still largely is, reserved and logical like the engineer that he is. The crazy thing was that he purchased a ring (in my size) with the intention to propose before he even met me. I always joked about catfishing him or being a serial killer but he said he just knew.

Did you give birth in Las Vegas?

I gave birth in Las Vegas and it was largely uneventful. I had a scheduled caesarean in an established, large chain hospital. Alastair was born full-term, hearing and healthy. He had jaundice at birth but it wasn’t treated properly by the doctors at his birth hospital and this resulted in severe lifelong disabilities including cerebral palsy, hearing impairment and seizures. Unfortunately because of a lawsuit, I am unable to further discuss this. It was a painful battle that lasted a heartbreaking 7 years.

Las Vegas is such a small community, everyone knew we were suing so we found it really hard to find the right people to treat Alastair. That was how we ended up constantly travelling 4-5 hours one way to Southern California to seek therapy and medical care for him. Since then we’ve lived our entire lives around Alastair’s needs.

Tell us about your son and parenting a child with cerebral palsy.

Alastair is the third of our four pregnancies and the only surviving one who was born to term. At birth, he was healthy, hearing and had no genetic conditions. He’s now quadriplegic, deaf, non-verbal and suffers from seizures because of malpractice involving newborn jaundice (Kernicterus).

Alastair is not cognitively impaired. The main damage to his brain controls movements, not intellect. He is a regular 10-year-old with a normal life expectancy.

Alastair loves reading, swimming, going to the cinema, playing games at the arcade, indoor skydiving, riding rollercoasters and surfing. He does it all with adaptive gear and a lot of assistance.

Our job as parents is to show our children the world, equip them with appropriate skills and knowledge, then hope they make good choices when on their own. Parenting a child with severe physical limitations is only different in that you need to get creative with age-appropriate activities, stay more alert because of their medical needs and plan to care for them from beyond your grave.

What has been the most challenging aspect of parenting a child with cerebral palsy, and how have you found ways to cope with it?

The grief and guilt is overwhelming because he was born healthy and Kernicterus is easily preventable. We always worry about not doing enough for our son. Both my husband and I are working with therapists to help us cope.

We always thought we’d have another child so that Alastair could have a sibling to look out for him when we’re gone but after my last miscarriage, I had a heart attack. My cardiologist advised me against carrying another baby because of my quadruple bypass. We also looked into surrogacy and adoption but ultimately accepted what life has presented us.

How has your perspective on life and parenting changed since your child’s diagnosis?

We spend a lot of time planning for the future. Right now, we are future-proofing our property and building Alastair an all-accessible resort-style home so that he can have a safe space of his own. We’ve worked with an architect getting input from an occupational therapist to create an environment where he can be as independent as possible – the type of taps, the height of sinks, sliding doors, lower drawers, strategically placed ramps, a rail system to lift him around the house etc. He also has a trust fund that is managed by a professional company so that even when we are gone, he will be able to live the same lifestyle until his end of days.

We love how you give your son opportunities to get involved in so many activities that may seem out of reach for many with cerebral palsy – what activities are his favourite?

LA has been amazing to Alastair and he’s taken up so many different activities – surfing, gym, horse riding, indoor skydiving, snow tubing etc. All of these activities are within driving distance from our house and many of them are free or state-funded. There are a multitude of private organizations in LA that want to help disabled kids experience the world! There are so many other local adaptive sports we haven’t had a chance to try yet – paddleboarding, scuba diving, baseball, basketball, fencing, skating etc.

Tell us about your career pre- and post-kids.

For almost 7 years, I was part of the programming team at The Esplanade. My portfolio was alternative music and I was in charge of producing Baybeats (back then the largest music festival of its kind with 90,000 attending).

I moved from indie music to indie games when I relocated to be with my husband. He has since successfully published two games. (Axiom Verge 1 & 2 were amongst the top 10 games in the world made by a solo developer – music, code and animation.)

In the beginning, we did everything on our own and travelled all over the country promoting the game – lugging exhibition gear, computers for demos, merchandise and then baby gear after Alastair was born (he went everywhere with us to game conventions too).

Favourite aspect about living in LA?

The weather–pool season extends for a long period of the year.

And the worst part?

The traffic! When we moved here, we were told not to judge anything by distance. You cross check time of day and day of the week, then plan your drive with an app. For example, It’s only a 30-minute drive from our house to Universal Studios Hollywood if it’s a weekend AND before 9.30am. Outside of that window, it can take up to 2 hours for the same drive.

What do you find is the hardest part of being a parent living in a foreign country?

I always thought I would have some kind of live-in domestic help when it was my turn to have a child. My mother was a career woman and we always had a helper at home taking care of things like many Singaporeans.

Is there something that you do to keep your child in touch with their Singaporean roots?

I have taught both my husband and son many National Day community songs. My husband can sing the classic ones with gusto!

What is the first thing you do each time you go back to Singapore?

I go to the coffee shop near my mum’s house and eat vegetarian Beehoon. It’s not my favourite thing to eat ever but it’s not something you can get here in the US. The side dishes like crispy tofu skin, mock char siew and pickled green chilies have a nostalgic factor. It reminds me of my grandmother who observed certain Buddhist vegetarian days and we’d share a packet while she tells me some off-tangent random thing in Cantonese.

What do you always bring back from Singapore for yourself and for your child?

Prima Taste Rendang premix – I make this at least once a month! Snake Brand Prickly Heat Powder for Alastair – keeps him cool in Summer!

Top five places in LA you would recommend to parents travelling with kids and why.

– Santa Monica’s boardwalk is Instagram-worthy and fun – there’s a vintage carousel, arcades, a colourful rollercoaster and an aquarium! Right across is the 3rd Street Promenade – buskers, cafes, eateries, shops and pop-up museums.
– The beaches of Malibu – world famous and beautiful. Families love to play in the sand and water. Watch surfers or catch a glimpse of dolphins, sea lions or whales!
– KidsSpace Museum. Less of a stuffy museum but more of a fun Science centre with indoor and outdoor activities. Pack a picnic or eat at their cafe (cute and healthy kid-friendly choices).
– La Brea Tar Pits. Right outside, you’ll still be able to see (and smell) active and bubbling tar pits. Many specimens and bones of animals that were found trapped in the same tar pits in the museum – it’s an actual Ice Age fossil site!
– Universal Studios Hollywood (only because Disneyland and Legoland are technically not in LA). If you’re not a theme park person, Universal CityWalk Hollywood would still be a fun visit. Lots of fun eateries (like Voodoo Doughnuts and Johnny Rockets), shops, and even Indoor Skydiving!

What’s the one thing you would miss about LA if you moved away?

The proximity to beaches and snow within the same day!

What would you dread and look forward to most if you were to move back to Singapore?

I dread the prospect of losing the social services and level of support that we are given here. In California, I get paid to be Alastair’s caregiver (or the State can pay someone up to 40hrs a week in my place); as a parent caregiver, I also get Respite Care benefits where the State pays anyone of my choice up to 40hrs a month to help me with errands or anything I need so I get rest; Alastair attends a public school and is well-supported by an aide in a General Education classroom with able-bodied and neurotypical peers; the State also pays for things like modifications for a wheelchair van and retrofitting a home for accessibility, amongst other things – all of which Alastair would not qualify for in Singapore as a US citizen (if similar programs even exist).

If I were to move back to Singapore, I look forward to not having to drive myself everywhere. Public transport is so convenient, reliable and affordable! Motorists in LA are so aggressive and I feel like I’m always driving defensively, it’s tiring!

How do you think Singaporeans can benefit from living overseas?

Living overseas means more travel adventures and exposure to more experiences since our island is so small. Because Singapore is always so stable and structured, a new environment is a great opportunity to challenge our adaptability.

Click here to read about other Overseas Singaporean mamas!