Leo’s story begins like so many newborns — a healthy baby, full of promise, the joy of his parents’ lives. But hidden beneath his small chest was a complex congenital heart defect
: pulmonary atresia with a ventricular septal defect (VSD). A simple, routine test at birth would prove to be the first link in a chain of life-saving events that ensured Leo survived — a chain that his mother, Emma, recalls with gratitude, fear, and awe.
🔶 A Pregnancy That Seemed Perfect
Emma had a relatively straightforward pregnancy. Her 12-week and 20-week scans showed no cause for concern. Later in the third trimester, she was diagnosed with
polyhydramnios — too much amniotic fluid — after experiencing pain and reduced fetal movements. Specialist scans between three and four weeks reassured her that everything was okay. Due to discomfort and other factors, she was induced at 37 weeks.
On 21st March 2020, Leo was born naturally. He was a gorgeous baby, but his hands and feet were very blue. Emma was reassured that this could be normal, but as the hours passed, subtle signs began to appear.
🔶 A Test That Saved a Life
Around five hours after birth, the midwife performed a routine pulse oximetry SATS check — measuring Leo’s blood oxygen levels. They were alarmingly low at
78%. Thinking the monitor might be faulty, the midwife brought in additional staff and repeated the readings. The results were the same.
Leo was quickly given oxygen, but it was clear something wasn’t right. He was taken straight to the neonatal ward, where doctors began investigating his heart and lungs. Hours later, a cardiologist explained the devastating news: Leo had
pulmonary atresia and a VSD, a life-threatening combination requiring immediate surgery to survive.
Emma reflects on the pivotal role of the test:
“The scariest thing is, if the pulse oximetry test wasn’t done at birth, we would have gone home and he would have died.”
🔶 A Journey Through Surgery and ICU
Leo was ventilated in the PICU at Leicester, kept on prostin to maintain blood flow, and underwent a CT scan the next day. The first attempt at a cardiac catheter procedure to stent his duct failed, and the duct began to close. At just
three days old, he required open-heart surgery with a Sano shunt to allow blood to flow from his heart to his lungs.
Complications arose quickly. The shunt blocked, cutting off blood flow, and Leo had to be placed on
ECMO life support. The prognosis was frightening, but the medical team worked tirelessly. Within ten days, after another catheter procedure to stent the shunt, Leo came off ECMO — a critical step in his fight for life.
By two weeks old, he was extubated and able to breathe with CPAP support. Feeding remained a challenge due to severe reflux and a cow’s milk protein allergy, requiring NG tube feeding and specialized formula. Despite a chest infection and repeated hospital visits, Leo finally came home at
four weeks old, beginning a fragile but hopeful new chapter with his family.
🔶 Ongoing Challenges and Triumphs
Even after returning home, Leo’s journey was far from over. He continued to struggle with feeding, oxygen levels, and fatigue. In
February 2021, his oxygen saturations dropped to 63%, prompting another cardiac catheterization. Doctors discovered additional complications with the major aortopulmonary collateral arteries (MAPCAs). A second open-heart surgery followed, replacing his conduit and attempting VSD repair. While some repairs were delayed due to weakness in his heart, Leo survived.
Today, Leo is thriving, considering everything he has endured. He struggles with breathlessness, fatigue, severe reflux, and ongoing feeding challenges, but he is alive, growing, and full of spirit — a testament to his strength and the lifesaving interventions he received.
💛 Courage in the Smallest Hearts
Leo’s story is a stark reminder that life can change in an instant, and that vigilance, awareness, and early detection are lifesaving. The
pulse oximetry test, quick and painless, was the moment that allowed doctors to intervene before it was too late.
Emma reflects on the journey with gratitude and awe:
“Not knowing in pregnancy that Leo was going to be born with CHD has been very difficult, not being able to prepare yourself for what’s next is very hard, but he is doing amazingly.”
Leo’s tiny heart faced unimaginable challenges in just his first days and months. Yet, through it all, he has shown extraordinary resilience, courage, and determination. His story reminds us that even the smallest hearts can carry the biggest strength, and that every newborn deserves the chance for early detection and life-saving care. 💛