The Amazing Reason Mothers in India are Giving their Babies Wearable Medical Records

This blog post was originally posted on Upworthy.com as part of a project with Girls’ Globe, Upworthy and Johnson & Johnson.

When Ruchit Nagar’s parents moved to Houston, Texas, in the late 1980s, they had no idea their son would grow up to save children’s lives in their home country of India.

Then again, it wasn’t exactly a total surprise, though, as their son had been interested in global health from a young age. Nagar had loved biology in high school, so he volunteered in American hospitals to learn more about the healthcare system. Later, he went on global health mission trips to Honduras and Ecuador, where he spent time working in a research laboratory at a government-run hospital.

But it was while he was in college, studying at the Yale Center for Engineering Innovation and Design, that he learned a startling truth. 1.5 million children die from vaccine-preventable diseases every year and an estimated 9.5 million infants worldwide still don’t have routine immunization services. Despite how critical these vaccines are, this “vaccination gap” still exists.

Nagar quickly realized that it wasn’t just an issue of access, either. Poor record keeping was making the problem much worse.

An agricultural community in Udaipur, India. Photo credit: Wikimedia Commons/TeshTesh

Maintaining immunization data in developing countries is a difficult task. Healthcare workers usually collect and store the information manually in paper log books, which means searching through all that data by hand. Couple that with how often families lose their medical documents and you can see what obstacles providers are up against.

That’s why, after Nagar’s professors asked the question: “What can you do to address the world’s vaccination gap?”, he and a group of other students came up with a business plan that could help address the vaccination gap, while helping healthcare workers too.

This led them to launch a nonprofit called Khushi Baby to help monitor the health care of mothers and children in India.

Khushi Baby (which translates to “Happy Baby” in Hindi) created a culturally-symbolic necklace that also happens to contain their full medical history.It’s a digital, battery-free, waterproof data storage device. In other words, it allows people to literally wear their medical records.

In order to access those medical files, healthcare workers in rural villages just need to scan the necklace with the help of the smartphone Khushi Baby app.

Photo credit: Khushi Baby

So, in a way, this invention is like a child’s medical passport, as well as a visual reminder for mothers to get their babies vaccinated on time.

The team hopes that when mothers and their babies wear their Khushi Baby pendant in the village, it might also start a conversation among mothers who may not be attending health camps regularly. And since Khushi Baby services include voice call reminders in the local dialect, the team is also hopeful that more mothers will plan checkups and vaccinations ahead of time.

Hopefully, this easy-to-use technology will help bridge the healthcare gap that exists between developing nations and the rest of the world.

“I have a reason to get out of bed every morning because I truly believe that what we are doing has the potential to make a difference to improve maternal and child healthcare for those who may otherwise be forgotten,” says Ruchit.

Digitizing vaccination data makes treating patients much easier, and, since the technology is relatively low-cost, it’s accessible even in low-income areas.

But Khushi Baby is about more than access to vaccines. It’s also about giving health workers the data they need to improve their treatment programs.

The technology empowers healthcare providers by allowing them to make better decisions faster. The app’s checkup summary page helps them consolidate patient info from busy health camps, which then helps them make appropriate recommendations and offer the right kind of care.

The Khushi Baby team at work developing technology. Photo credit: Khushi Baby

“Many of our early interactions with mothers and frontline nurses in rural Udaipur [India] showed us that there was an opportunity to do things better,” says Nagar.

Monitoring data is crucial in helping countries prioritize and tailor vaccination strategies for each region. The app also comes in handy for medically-focused nonprofits because it helps them monitor the impact of their work, ensuring the success of their immunization programs.

Of course, for the Khushi Baby app to work, people have to actually use it. That’s why Nagar chose to make it a necklace.

He tapped into a cultural norm in India to get locals interested in wearing his smart device. The black thread around the necklace is traditionally worn across India to ward off buri nazar, or evil eye. It’s said to bring good health and fortune.

“By observing that children were wearing jewelry in rural Udaipur, we realized that we could slot our technology into something that was already culturally-symbolic and accepted by the communities. In doing so, it made our wearable less likely to be lost or forgotten,” he explains.

A woman in India wearing the Khushi Baby necklace. Photo credit: Khushi Baby.

So far, the Khushi Baby app is operating in over 350 villages and tracking the health of over 15,000 mothers and their babies.

And they’re not stopping there.

Khushi Baby aims to scale its impact to over 1000+ villages with a team of over 250 health workers. They hope to track the health of over 80,000 beneficiaries in the future.

Photo credit: Khushi Baby

“Closing the vaccination gap will require national and multinational resources and efforts,” says Nagar. “Our goal is to track the health of the entire district of Udaipur by 2020 and lay down the blueprint for other districts across India (and elsewhere) to replicate and scale-up.”

It’s no surprise Khushi Baby was named as one of the finalists of the GenH Challenge, which acknowledges and awards innovative solutions to worldwide health issues.

Khushi baby is on the verge of transforming lives for the better in areas that desperately need the help.

It all started with a simple but powerful idea — that everyone, no matter where they are in the world, deserves the chance to thrive. Thanks to innovators like Nagar, that possibility is closer than ever.

And with technology like this leading the way, we might someday live in a world where no mother or child is left behind.

Preeti Shakya co-authored this post with Maisha Z. Johnson.

The Cost of Caring for a Medically Complex Child

My son relies on Medicaid to live, and every time US lawmakers vote to strip Medicaid’s funding, they put my young child at risk.

Recently, a conservative group in the USA announced their latest proposal to repeal the Affordable Care Act. In the same month, the presidential administration announced a finalized rule on junk insurance plans, and lawmakers unveiled a budget proposal that contains enormous cuts to Medicaid and other lifesaving health care programs.

My son, Colton, is six years old. He’s intelligent and kind – and like thousands of Americans across the country, he is a child with complex medical needs. As a member of Little Lobbyists and Health Care Voter, I am one of the millions of people fighting for his right to live.

Tonya’s son, Colton. Photo credit Tonya Prifogle.

Colton was born after an easy labor, but we only had a few moments to enjoy his peace before he suddenly stopped breathing and began to have seizures. I lived many parents’ worst nightmare when my beautiful baby spent the first months of his life in the neonatal intensive care unit (NICU), fighting for his life.

A few weeks into the NICU stay, a hospital representative from billing came to inform us that Colton had reached his ‘limit’ on the insurance that I received through my job.

I remember staring at her, confused. His limit? What did that mean?

It meant that since there were certain caps on our insurance policy, soon after his birth Colton had already reached his lifetime limit of available insurance.

The hospital representative asked about our plan for payment. I didn’t know how to respond. I hold a Master’s Degree, and both my husband and I have worked our entire lives. And yet, like countless working families, we did not have the millions of dollars to pay health care providers for the necessary treatment to keep our child alive.

Medicaid was our answer.

In those early months, Colton suffered numerous central apnea episodes, during which he would stop breathing and require resuscitation. Due to his low muscle tone and inability to swallow, he was also having difficulty feeding. Every day, my husband and I watched our child becoming weaker and weaker.

The solution was for him to undergo surgery to place a tracheostomy tube. In the days after his surgery, I remember standing beside Colton and crying.

As a new parent of a child with complex medical needs, I felt incredibly overwhelmed by the numerous machines and wires surrounding him: pulse oximeter, heart apnea machine, ventilator and circuits, oxygen, suction machine, feeding pump and extensions. I stared at all of it and wondered how on earth I could ever parent him.

One of the physicians must have read my mind because he walked up beside me and said, “Once Colton is in his home with his family and in a routine with people who love him, he will thrive and he will grow and you will see him at his best.”

It was a moment I’ve never forgotten. Those words from that doctor were the best medicine this mother could have ever been given. I became determined to learn everything I could, to get him home where he belonged, and to give him a life filled with happiness.

But in the months that followed, I found out that it takes much more than loving parents to keep a child like Colton healthy.

Every month, my family receives shipments from our medical provider of supplies to help keep Colton alive. We receive boxes filled with ventilator circuits, trachs, trach connectors, trach ties, suction supplies, filters, gauze, humidification supplies, syringes, catheters, nebulizer kits, pulse ox probes, peroxide, sterile water, medical tape, prescription formula, Pedialyte, feeding pump bags, extension tubing…the list goes on.

Each item is a necessary piece of the puzzle that keeps my son alive and out of the hospital. Each item is a vital piece of his life that allows him to laugh and play with his sisters and watch cartoons and kick his legs to dance to music. And each item arrives thanks to the continued coverage of Medicaid.

Medicaid became our lifeline, the salvation that keeps my child thriving and my family out of poverty.

I’ve watched Colton battle back from the brink of death more times than any mother should have to endure – and every time lawmakers attempt to cut the funding to the program that keeps my son alive, they push him back towards that brink.

Colton has a thirst for life. He loves every moment of every day, he takes the world in and gives back to all of us with his lesson of resilience. And like any child, he deserves the chance to live.

My Journey of Political Courage, Resistance & Solidarity

Earlier this year, I was glad to be present to support a close friend in the miracle that is child birth. I stood by her through her unmedicated birth plan navigated by calculated breathing and back rubs, and through the eventual contractions that culminated in the birth of a beautiful baby girl.

Being an afternoon of many firsts, I also guided them in their first bonding experience between mother and child – breastfeeding. Having gone through this myself (my daughter turns four next month!), I am glad to be able to support my friend and her baby through the recommended 6 months of exclusive breastfeeding and beyond.

Great news indeed, but the journey of breastfeeding is still laced with many social, economic and political challenges to be overcome. Culture remains a great influence on the uptake of positive breastfeeding practices, especially in the African context. Positive social and cultural beliefs and practices which associate breastmilk with intellectual development and general good health encourage breastfeeding. On the other hand, long-standing myths and misconceptions weaved through cultural beliefs continue to be perpetuated from one generation to another and influence breastfeeding outcomes.

I confronted many myths in my own breastfeeding journey:

Myth 1: Breast milk alone is not enough to support optimal growth

According to WHO, exclusive breastfeeding is the practice of feeding only breast milk (including expressed breast milk) and no other liquids or solids with the exception of drops or syrups consisting of vitamins, mineral supplements or medicine and oral rehydration solution(ORS). When I was breastfeeding my daughter, I often received unsolicited advice on why breast milk was not adequate. For example, I was advised to supplement breast milk with water so that the baby does not get dehydrated or wean her off at 3 months to reduce and/or prevent colic.  What we know, though, is that breast milk’s composition changes from one feeding to another to meet baby’s physical, growth and developmental needs. Even over a single feed – it is higher in water content at first to quench the baby’s thirst and then the nutrient composition increases with time.

Myth 2: Breastfeeding is old fashioned & for poor people who cannot afford infant formula

I encountered social pressure from friends who felt that breastfeeding was old-fashioned and some wondered whether it was because we couldn’t afford infant formula. This meant that I received tins upon tins of infant formula with every visit. Needless to say, both baby and I boycotted any such offers – much to the chagrin of the gift bearers. The role of corporations in advancing aggressive marketing strategies that undermine breastfeeding and mothers’ confidence must be checked. The International Baby Food Action Network (IBFAN) (which monitors countries’ compliance with the International Code of Marketing of Breastmilk Substitutes) indicates that the world’s largest baby food companies are violating the Code which demands all communication to be ‘honest, truthful and not misleading’. Closely connected to this marketing gimmick is messaging that some mothers naturally do not produce enough milk. What this means is that a lot of young mothers ‘think’ they are choosing to breastfeed and then formula feed but in reality, they are actually responding to ‘profit-driven’ marketing strategies through advertisements and manipulation of health workers by corporations that eventually become passed on as culture.

Myth 3: ‘Evil eye’ if you breastfeed in public

Being the extrovert I am, this is a myth I encountered frequently! According to some African traditions, it is believed that if you breastfeed in public you could be watched by people believed to have an ‘evil eye’ –  basically a glare associated with witchcraft. Apparently, this can result in breast milk production stopping prematurely or mothers developing breast sores. This, coupled with disapproving looks I had to contend with when breastfeeding in public, meant that I had to premeditate my movements and compromise on which functions I attended – especially if I was planning to go with baby. For most mothers, this may prompt them to avoid breastfeeding or stop altogether, especially when attending public gatherings or generally being in public.

The female body is too often considered public domain open to ogling and scrutiny. On top of this, breastfeeding within a hypersexualized culture reduces female breasts to sexual objects and the mere act of nursing is laced with sexual undertones. The combined effect is another common belief among young mothers – that breastfeeding for prolonged durations will make their breasts sag and consequently unattractive.

Not all mothers are able to breastfeed their babies for a huge variety of reasons and the choice to breastfeed ultimately rests with the mother. For me, the choice to breastfeed was an act of resistance to the hold of patriarchy and capitalism has on our minds, bodies, and lives. I contend that in addition to public health interventions to promote breastfeeding, it will take political courage, resistance and solidarity to truly interrogate the preconditions under which women can freely decide to breastfeed.

#13 – Midwives Providing Safe Birth in Humanitarian Settings

 

“(Midwives) give support to women whether they are in labour or not, they are social solidarity players in the local communities, not only the providers of health services for women & newborns.” – Mohamed Afifi, UNFPA

Welcome back to The Mom Pod! In this episode Julia Wiklander connects us with midwives and advocates about maternal and newborn health in humanitarian settings, at the 31st ICM Triennial Congress in Toronto, Canada. The midwives that we meet work in Mexico, Somalia and Afghanistan and share experiences from their work and talk about the challenges they face to deliver care.

With a world in constant political change and with the largest number of displaced people in history, ensuring that every mother and every child has access to a midwife during pregnancy and birth, is a difficult promise to keep. The world needs more midwives.

“They’re not refugees, they are not citizens – they are migrants. We need to start to name this as a public health issue.” – Cristina Alonso, Midwife working in Mexico

Our conversation is also broadened by UNFPA Reproductive Health Specialist for the Arab States, Mohammed Afifi, who tells us that in the region, midwives is the cadre of health professionals that are committing to delivering care, despite conflicts that push away many of their colleagues.

Safe Birth Even Here is a Campaign run by UNFPA to raise awareness of the high rate of maternal deaths in emergency situations and increase support for services to protect the rights of the women and girls living in humanitarian and fragile settings. Johnson & Johnson is one of the partners supporting the campaign, and has committed to supporting health professionals at the frontlines of care. We speak to Joy Marini at Johnson & Johnson about why the company is investing in the health of women & children in humanitarian settings and what they are doing to ensure that midwives receive support in their important work. 

In this episode, Young Midwife Leader, Massoma Jafari from Afghanistan, interviews Jane Philpott, the Canadian Minister of Health and asks her what action Canada is taking to support midwives in Afghanistan. Philpott gives the young midwife advice and promises new connections. A meeting that hopefully sparks further engagement by the Canadian government to invest in midwives. 

Listen to the full episode here.

During the ICM Congress, Johnson & Johnson launched their new initative – the GenH Challenge. This exciting opportunity hopes to encourage midwives to see themselves as innovators with the power to help to create the healthiest generation in human history – “GenH”. The GenH Challenge is looking to discover brand new ideas from the front lines of care that can change the trajectory of health. If this sounds daunting, don’t worry! The competition welcomes ideas in their earliest stages, and it welcomes small ideas that have the potential to create great impact. You can apply any time until 4 October 2017. Full guidelines are available at www.genhchallenge.com.

See all of the Girls’ Globe LIVE coverage from the 31st ICM Triennial Congress in Toronto, Canada here