Bringing work home—in a good way
Using voice technology to promote CHD awareness
I have been managing projects, programs, campaigns, and product launches for 20 years. As Program Director at thirteen23, I get to oversee the process for growing ideas and concepts into full-fledged digital experiences.
At home, I’m overseeing the growth of Nina, my powerhouse daughter who has a combination of complex CHDs (Congenital Heart Defects). She’s had four open-chest heart surgeries and five heart catheterizations to date. She was three days old for her first cardiac intervention, and she was six years old during her last one. Don’t let these recovery photos fool you into thinking she’s anything short of fierce, fiery, and fortunate. She’s met every challenge put in front of her and has more bravery than anyone else I know.
It’s a weird thing, giving birth to your own hero.
“So she’s all better now, right?”
This is an optimistic question I get a lot. Nina’s surgeries were largely planned as part of a series of palliative repairs that most children with a single-ventricle heart undergo. We found out at my 20-week gestation anatomy scan that her heart would need surgical intervention soon after birth, as the first of three expected open-heart surgeries. True to form, Nina does things her own way, so she required four surgeries. Her most recent heart surgery, which took place in May 2017 (the Fontan operation), was the “final planned” surgical repair of the series related to her diagnosis, but it is certainly not expected to be her last cardiac intervention.
Given the complexity of Nina’s cardiac anatomy, she’ll require lifelong checkups, diagnostic tests, medications, and procedures (e.g., heart catheterizations, of which she’s had five, the most recent being just five months ago) — possibly escalating to a heart transplant at some point in the future. My hope, my money, and even my umbilical cord blood is banking on science having a better option by then —“then” being when her new Fontan blood circulation starts to fail her. Unfortunately we don’t have clear visibility into when that might be, since survivorship outcomes are so variable among the population. The wait-and-see game is my least favorite of all — a Program Director who isn’t allowed to plan and impact the outcomes? The horror!
Do what you do, then do what you can
To oversee projects, you have to be organized and detail-oriented, calm under pressure, an excellent communicator, a team advocate, a planner, a driver of progress, a budget watcher, and a meeting wrangler. You have to ask the right questions, devote the right amount of energy to the most important aspects of the process, and keep up with the latest trends, tools, and information. You tie up loose ends, coordinate multiple teams and stakeholders, and raise flags when things need escalating. Turns out, to parent a medically-complex child, you have to be all these things and more, and I learned early on that my professional skills would prove useful in navigating this life with Nina.
When my company led its first SXSW workshop on Voice Design for social good, I knew it was something I wanted in on. I created my first Alexa Skill by following the workshop’s step-by-step instructions, and it was easier than I expected! Upon invocation, “Team Nina” gives the user CHD facts borrowed from reputable online sources. Did you know that CHDs are the most common birth defect, affecting nearly 1 in 100 babies? I didn’t either, until Nina came into our lives. Awareness about CHDs (an acronym I somehow hadn’t even heard of before her diagnosis) is dismally low.
The truth is, awareness leads to funding, funding leads to research, and research leads to breakthroughs — so making this voice app was close to my heart, and it felt important for Nina’s.
Let me Google that for you
I’ve certainly evangelized enough in my office about CHDs, and I’m lucky to work with people who are both brainy and loving. When the Google Assistant came out, the owner of thirteen23 took my Alexa Skill contents and made an Action for the Google platform, using the same invocation name: Team Nina. We don’t have an Amazon Echo at home — we’re a Google Home family — so it was super cool getting to show Nina the voice app she inspired. Like most kids, Nina made fast friends with our Google Assistant, for more than just CHD fact-finding. She loves it so much, in fact, that she recently asked to be our Google Home for Halloween:
Nina makes everything better
This inspired me to make an update to the Google Home build. Why hear CHD facts from a boring ol’ robot if you can leverage Nina’s early reading skills, adorable voice, and childlike enthusiasm?! Over the course of a month or so, I had her record all the facts and prompts for the Google Assistant. She was SO tickled to hear her voice coming from the device, and I’m incredibly proud of her for having the patience and fortitude to record these when she was only five.
If you’d like to hear Nina recite CHD facts on a Google Assistant near you, just say “OK Google, Open Team Nina.”
“OK Google, what can I do to help?”
February 7–14 is Congenital Heart Defect Awareness week, so now that you love Nina (almost) as much as I do, what can you do to help spread CHD awareness and support the cause?
- Share this article, and encourage your friends and family to ask for Team Nina on their voice-assisted devices, so they can be more informed about CHDs. Only Google Home has Nina’s voice, but Alexa will still deliver facts.
- Tell your pregnant loved ones to ask these 5 questions at their 20-week fetal anatomy scan, and to make sure a pulse oximeter is used to check oxygen saturation levels after the baby is born. It’s simple and painless.
- Consider supporting the Children’s Heart Foundation, the country’s leading organization solely dedicated to funding CHD research.
- Consider supporting the Adult Congenital Heart Association, whose aim is to improve and extend the lives of adults living with CHDs. This is a group I’m hopeful Nina will graduate to be a part of one day.
If you’ll be at SXSW and are inspired to create your own Skill, our team is putting on a new and improved SXSW workshop, walking participants through the steps and best practices for creating Alexa Skills of their own.✨
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