On December 12th, 2016, Nell’s life changed forever when she gave birth to her third child, Sonny-Lee, prematurely at 35 weeks and one day. Weighing just 1.5kg, the tiny baby boy’s early arrival was only the beginning of a difficult journey that would see him battle congenital heart disease (CHD) with remarkable courage. What followed would be a path of uncertainty, medical procedures, and sheer determination from a family that never gave up.
The Early Diagnosis
Born prematurely, Sonny-Lee faced an uphill battle from the start. His tiny body was fragile, and soon after his birth, doctors discovered that he had a complex congenital heart defect. “At just 24 hours old, our precious boy was diagnosed with Pulmonary Atresia with intact ventricular septum, hypoplastic right ventricle, tripartite configured ventricle, and stenosis left and right,” Nell recalls. “We had no idea what was in store for us. The doctors told us they weren’t sure if he would even make the 100-mile journey to the hospital that could save him.”
Sonny-Lee was immediately transferred to the Royal Brompton Hospital in London, where the fight for his life began. “We were terrified. We didn’t know what was going to happen next, but we held on to hope,” Nell says.
A Rocky Start: The First Surgery
In those early days, doctors attempted a ballooning procedure to help open the heart’s arteries, but Sonny-Lee’s small size—just 1.5kg—made the procedure unsuccessful. His doctors decided to wait until he was bigger before trying again. Six weeks later, weighing 2kg, Sonny-Lee was finally ready for surgery.
On January 18th, 2017, Sonny-Lee underwent his first heart surgery. The family faced seven hours of pure anxiety, uncertain whether their son would survive the procedure. “When they called us to say he was out, we felt a moment of relief,” Nell recalls. “But then we learned he had suffered a cardiac tamponade—a life-threatening condition where the sac around the heart had been punctured. The ballooning was successful, but a stent wasn’t an option because it was too dangerous.”
Though the surgery had been successful in some ways, Sonny-Lee’s recovery would be slow and full of complications. He spent weeks in intensive care, where his body fought hard to recover. But in the end, after nearly a month, the family was finally able to take their son home. “On February 15th, we finally took him home,” Nell says, a soft smile on her face. “It was a surreal moment, but the road ahead was still uncertain.”
The Wait: More Challenges Ahead
Over the next two years, Sonny-Lee’s medical journey was filled with cath lab appointments and ongoing monitoring. He was too small for another surgery, and more problems were beginning to emerge. Despite all of this, Sonny-Lee continued to fight. By October 12th, 2018, at just one year old, the time had finally come for the next surgery.
Sonny-Lee’s medical team decided to attempt a single repair for his heart defect. However, after further examination, the surgeons realized they could offer him a better outcome with a more complex procedure—a biventricular repair, which would require them to fix both sides of his heart. “The surgeons saw potential for a better outcome, and they decided to go for the more complicated repair,” Nell explains. “We were nervous, but hopeful.”
The Long Road to Recovery
The surgery lasted 13 hours, and when it was over, the family learned that their little boy had been through an incredibly tough battle. “Sonny-Lee had two cardiac arrests in just seven hours,” Nell says, her voice breaking. “He was so poorly after surgery. It felt like coming home was further away than ever.”
But Sonny-Lee, true to his nature, showed everyone just how strong he was. “He started to improve, slowly but surely,” Nell says. “Thankfully, he didn’t have any brain damage, but he did end up with vocal cord damage due to the surgeries and the sedatives used to keep his body relaxed and safe.”
For the next few weeks, Sonny-Lee was dependent on oxygen, and it wasn’t clear when he would be able to breathe on his own. But then, one evening, it happened—Sonny-Lee was able to breathe without the help of oxygen. “It was the moment we’d been waiting for,” Nell says, smiling through her tears. “He did it on his own, and that’s when we knew we were ready to go home.”
A Fighter at Heart
Three weeks after surgery, the family finally returned home, feeling both immense relief and overwhelming gratitude. “We had been through so much, but we had Sonny-Lee with us,” Nell says. “It was the best feeling in the world.”
Though he had made it through the hardest part of his medical journey, Sonny-Lee’s challenges were far from over. In 2019, he had another surgery that was partially successful. Though the surgery didn’t fully fix his heart, Nell is grateful for the attempt and the progress Sonny-Lee continues to make. “He’s a true fighter, and we’re so proud of him,” she says. “Even after all he’s been through, he still manages to smile and live his life with so much joy.”
Today, Sonny-Lee is thriving as a five-year-old boy who never lets his condition define him. “He’s in mainstream school now and is talking and growing stronger every day,” Nell says. “He’s still on thickener to help him put on weight, but he’s living without medication for now, and that’s a huge milestone for us.”
Sonny-Lee also requires regular nursing visits to check his weight and oxygen levels, but he’s showing incredible resilience. “His oxygen levels are safe, even though they’re lower than normal. It’s scary, but it’s safe for him,” Nell explains. “He’s learned to live with his condition and never lets it get in the way of living life to the fullest.”
A Community of Strength and Support
Through everything, Nell and her family have been supported by Tiny Tickers, a charity dedicated to helping families with congenital heart disease. “Tiny Tickers has been there for us every step of the way,” Nell says. “They provided us with so much information and support in the early days, and they continue to be a lifeline for us.”
Sonny-Lee’s story has inspired others, and his big sister and aunt now travel around the east of England, educating people about congenital heart disease (CHD) and offering support to families in hospitals. “They help families who are going through what we went through,” Nell says proudly. “It’s amazing to see them giving back, and it’s a testament to Sonny-Lee’s strength.”
A Future Full of Hope
Although Sonny-Lee will continue to require surgeries and medical monitoring, Nell is hopeful for his future. “We don’t know what the future holds, but we know we’ve been through the worst,” she says. “Sonny-Lee has shown us that anything is possible with strength and determination. He’s our little fighter, and we couldn’t be prouder of him.”
Sonny-Lee’s journey is a testament to the strength of the human spirit, the love of a family, and the power of medical intervention. “I became a CHD mom the day we got the diagnosis,” Nell reflects. “It’s been the hardest journey of our lives, but also the most rewarding. We’re so grateful for the care and love Sonny-Lee has received, and we’ll continue to fight for him every day.”