When Becky found out she was expecting her daughter Iris, she and her partner had already faced significant challenges. After enduring two previous losses and having undergone IVF, they were cautious but hopeful as they anticipated the arrival of their baby. Little did they know, their journey would take a turn when, during a routine 20-week scan, their world was shaken once again.
The sonographer at the scan couldn’t get a clear view of Iris’ heart and pointed out a potential issue, suggesting that everything might still be okay. She even used an acorn keyring to illustrate the size of the baby’s heart, but for Becky, this small gesture did little to calm the growing anxiety. Given their past experiences and the knowledge of the IVF journey, they were prepared for bad news. This scan led to a follow-up appointment, and soon after, a referral to a specialist heart clinic, where they learned that Iris had been diagnosed with
tetralogy of Fallot (TOF).
For Becky and her partner, the diagnosis was devastating, but it was also a blessing that Iris’ condition was detected before birth. This prenatal diagnosis gave them the chance to prepare for what lay ahead and, through online groups like the
Tiny Tickers Facebook group, they were able to connect with other families who had gone through similar experiences. These connections offered them valuable insight, support, and hope as they faced the unknown.
Iris was small for her gestational age, a common occurrence for babies with heart conditions, and the doctors decided that she would be delivered at 37 weeks to ensure she received the care she needed. After her birth, Iris spent some time in the NICU and on the cardiac ward, but to their relief, her vital signs were perfect. The doctors admitted that if her heart defect had not been picked up during pregnancy, it would have gone undetected, as she appeared normal at birth.
At around six weeks old, Iris began routine oxygen saturation monitoring by community nurses. To their shock, during the first check, her oxygen levels were alarmingly low. This resulted in a blue-light transfer to the hospital and the start of medication. This unexpected turn of events left Becky and her partner reeling. They had been told to watch for any color change as a sign of distress, but Iris’ condition didn’t follow the textbook signs. Her episodes went unnoticed until her oxygen levels dropped dangerously low, and these “silent” desaturation episodes only became apparent because of continuous monitoring.
Over the next few weeks, it became clear that Iris’ condition was different from what the doctors had anticipated. She wasn’t showing the typical symptoms of cyanosis, and her episodes were occurring at night, when her oxygen levels dropped significantly without any visible signs. After further monitoring, the doctors made the difficult decision to proceed with surgery at just
10 weeks old—earlier than usual, as the typical age for full repair of TOF is around six months, and Iris was only 4kg.
Iris underwent open-heart surgery, which, though common for children with TOF, was a significant risk for a baby of her size. The surgery involved repairing the heart’s structure to improve blood flow and to ensure the oxygenated blood reached the body properly. The surgeon was optimistic about the outcome, but for Becky, the fear of her daughter undergoing such a major procedure was overwhelming.
After the surgery, Iris spent several days in recovery, and the first days were critical. Becky and her partner waited anxiously, hoping and praying for their little girl’s recovery. But after just
six days, they were discharged from the hospital, and the family was finally able to spend their first Christmas together at home, free from the constant fear of surgery and the unknown.
Looking back, Becky knows just how crucial the work of Tiny Tickers and early detection was in saving Iris’ life. The organization’s work to train sonographers and raise awareness of heart conditions in babies allowed Iris’ heart condition to be caught early. Without this intervention, there’s no telling how bad Iris’ situation might have gotten. The idea of how low her oxygen levels could have gone is still a frightening thought for Becky.
Iris’ road to recovery, though filled with uncertainties, has been nothing short of miraculous. Doctors are confident that, with the surgery completed, Iris will lead a full life without any restrictions on what she can achieve. As Becky reflects on the strength and resilience of her daughter, she is filled with a deep sense of gratitude and awe for the medical professionals who helped Iris heal.
One of the most heartwarming aspects of the experience was the connection Becky and her family made with other parents going through similar journeys. Iris’ “roommate” in the hospital was a baby with a ventricular septal defect (VSD), another common heart condition. After their discharge, the two families connected through the Tiny Tickers group on Facebook, sharing their stories and offering each other support during their challenging times.
Today, Iris is thriving, and her parents couldn’t be more grateful for the life-saving treatment she received. She’s a beautiful, healthy toddler who is making up for lost time. As they continue to have regular check-ups, the family is hopeful for the future. Becky knows that their story isn’t just about Iris’ survival; it’s about the strength of a family, the power of early detection, and the incredible work of the medical professionals and organizations who make a difference in the lives of heart babies.
Iris’ journey is a reminder of the resilience of these tiny warriors and the importance of support and advocacy for families facing congenital heart defects. With the right care and early intervention, children like Iris have the chance to live full, vibrant lives—something Becky and her family will never take for granted.
