Introducing the LWB Pediatric Cardiac Database: A Message from our CEO

I’ve got some really exciting news to share on a project that has been a dream of ours for many years: the LWB Pediatric Cardiac Database.

In our work with children born with heart defects around the world, we learned that up to 90% of babies born with heart defects in developing countries do not have access to required healthcare.

Their birth location often dictates their very survival.

We have seen repeatedly that families in these countries, given the news that their child needs heart surgery to survive, then begin a desperate search for help. They often email every charity and overseas hospital they can find online, pleading for someone to save their child’s life.

Cardiac Care for Children in Uganda

With over 8,000 children a year born with heart defects in Uganda and only one cardiac hospital for the entire country (The Uganda Heart Institute), the sad reality is that there is great inequity in care.?

LWB and other charities have sought to bridge the gap by providing financial assistance to underserved children. The Uganda Heart Institute often gives families a list of these charities, but each charity has its own application process. Families are left to scramble for options while caring for their sick child.

Some families are more adept at technology and scanning documents, while others don’t even have access to a computer. Others are illiterate or speak a minority language, making it difficult to navigate the complex process to request help from a charity. Some families aren't fully informed that their child’s condition is inoperable and receive no guidance in finding palliative support.?

Seeing all these things weighed on our hearts, and we began brainstorming about a possible solution.

I’m excited to announce that LWB has now configured a secure Pediatric Cardiac Database, with permission from the Ugandan government, to capture the information of every child in this country who needs cardiac intervention.

This is a first-of-its-kind project for Uganda.

How the LWB Pediatric Cardiac Database Works

Because computer literacy is so variable in Uganda, families can now call a hotline number set up by LWB, given to them by their child’s doctor. One of our nurses collects their information by phone and enters it into the Pediatric Cardiac Database. Then, a cardiologist on our team regularly reviews the entries and assigns each case a priority level for surgery based on the severity of the child’s condition -- not the family’s ability to pay.?

By streamlining this process and organizing cases, LWB can quickly identify children to assist as funds become available. We also want to work collaboratively with other charities, giving them access so they can identify children they have funds to help. Our goal is that families will no longer have to apply to multiple organizations, which should decrease the administrative, on-the-ground cost for charities, with the assumption that more funding will be directed to surgical care.?

Apart from lifesaving surgery, the data we collect will enable children to receive other essential care as well:

• Referrals to hospice/palliative care groups in their home region for children with severe heart issues that preclude surgery
• Referrals for issues such as malnutrition
• Educational opportunities for families so they can receive emotional support and the chance to better understand their children's diagnoses

Every Child Deserves a Chance for Healing

Through our Pediatric Cardiac Database, LWB has created a national solution to simplify the process of navigating an often-complex health system. Families now have a single phone number to call to be entered in the database, with the goal that they can submit a single application that could be accessed by many organizations who might be able to sponsor them.

LWB wants to streamline children receiving care while providing dignity and emotional support to families facing a difficult medical journey.

One of our four core values at LWB is “We get stuff done.” I'm so proud of our amazing team around the world for tackling every obstacle we encountered while making our innovative Pediatric Cardiac Database a reality. It’s still in its early days, but 80 children with heart conditions have already been entered into the system.

EVERY child deserves their chance to be healed. ?

With a grateful heart,

Amy Flynn-Smith , Chief Executive Officer and Founder of LWB