ISUOG has today launched a new global awareness initiative, Every Little Heart Matters - a campaign to raise awareness of congenital heart disease, at the Annual General Meeting our International World Congress in Cancun, Mexico.
Globally, congenital heart disease (CHD) is the most common type of birth defect, affecting approximately 1 in 100 live births. Nearly half of the children born with CHD will need a medical intervention and 25% will need it in their first year, just to survive.
Ares Alma is a mother-of-three and tattoo artist from Barcelona, Spain, who has a son with a congenital heart defect. Her son was diagnosed prenatally, shortly after she lost her second-born daughter to an infection that claimed her life within minutes of her birth. Ares works with many parents who have similar experiences to hers, parents to a child living with a heart defect. She works with them to create tattoo art that celebrates their children for who they are beyond their defect.
Ares said: “At the beginning I did anything that they asked for, for example, an atomic heart with a silhouette of the kid inside but now I always try to give it a twist because I believe that it is very important to know that your son is much more than this – why make a heart for his ‘defect’ and not a dinosaur because he loves dinosaurs. Why are we defining our kids by their heart problems? Since my kid died, the second one, I have been helping a lot of families because this has changed my life - seeing the families that carry their lives with so much pain.”
The aim of this global initiative is to build diagnostic confidence, simplify cardiac imaging, eradicate the fear of cardiac scanning, promote equity in detection, maximise early recognition impact and build confidence for parent advocacy groups.
As part of the campaign, ISUOG has made available a bank of resources that includes free educational chapters from VISUOG, as well as patient resources and practice guidelines. Additionally, Ultrasound in Obstetrics and Gynecology (UOG), will release the Virtual Issue on Congenital Heart Disease, which is a curation of all the latest research on fetal congenital heart disease.
ISUOG President, Prof. Reem S. Abu-Rustum said: “As we celebrate our 35th anniversary, we are uniquely positioned, as the leading authority in ultrasound and prenatal diagnosis, to launch our first global initiative dedicated to congenital heart defects. This will allow us to utilise our distinctive attributes and combine our synergistic efforts to maximise the prenatal detection of congenital heart defects and improve neonatal outcomes.
“We are also soliciting new research on how to simplify cardiac screening, assess our global current status of prenatal detection, assess barriers to detection and how we may utilise AI for equitable access where the skill and expertise may be lacking.
“At the ‘heart’ of ‘Every Little Heart Matters’ is our patient: the mother and her fetus. We are hoping to advocate for our patients and families and give them a voice to share their stories with global communities, both within and outside of healthcare.”
ISUOG is emphasising the importance of awareness of congenital heart disease and the necessity for prenatal testing especially in lower-resource settings – to really promote equity in detection through simplifying the diagnostic process, so that it is not just patients in higher resource settings who have access to early diagnosis.
Ares recalled her experience of her son's diagnosis; she said: “My husband is from Chile and when we were having our prenatal visits every week, he told me, we don’t have money to pay this and I told him, we are not going to pay anything, and he couldn’t believe it. So, we are very lucky in Spain.”
These gaps in equitable care will be addressed at its global online forum, to be held in March 2026.The forum will be hosted alongside key stakeholders from global health organisations and world experts on imaging the fetal heart. A formal statement with a summary of recommendations will subsequently be published.
Find out more about Every Little Heart Matters on our dedicated campagin page.