Rachel's Story
Rachel Lee, born on 5th March 2017, faced a critical medical condition at birth when doctors discovered she was born without an anus. At just two days old, she was urgently transferred from Cork University Maternity Hospital to Children’s Health Ireland (CHI) at Crumlin for immediate evaluation and treatment.
One week later, Rachel underwent an emergency colostomy stoma surgery. The purpose of the surgery was to divert waste away from the lower intestines by creating an opening (stoma) in the abdomen, where a colostomy bag collects waste.
“Our world completely changed,” said Niamh Lee, Rachel’s mum. When Niamh and Philip, Rachel’s dad, should have been celebrating the arrival of their newborn, they were instead rushing back to an empty house to pack a hospital bag, following an ambulance to Crumlin, and facing the devastating reality that their baby needed emergency surgery.
The following year would see Rachel undergo multiple procedures, including a PSARP (Posterior Sagittal Anorectoplasty) at six months old, a stoma reversal at nine months old, and two prolapse repair surgeries.
Then, at just four years old, Rachel needed a permanent colostomy stoma, with an emergency repair needed in September 2021. But Rachel’s stoma gave her a new lease on life. She returned to school, started gymnastics and dancing again, and became more energetic than ever. Niamh explains, “Her classmates knew about her stoma, but to them, it was just another part of who she was. ‘Oh yeah, Rachel has a bag,’ they’d say. No stigma, no embarrassment, just acceptance.” Rachel also attended preschool in the hospital during her month long stay in September, with one of the hospital schoolteachers coming to her room every weekday to ensure she wouldn’t miss out.
Looking back, the journey to this point was incredibly tough. At the start, Niamh recalls thinking, “Our life is over. We will never be able to go anywhere again.” But one of the nurses in Crumlin reassured her: “One day, you’ll be changing Rachel’s bag on a park bench and won’t think twice about it.” Niamh said, “At the time, I thought she was crazy, but she was right.”
Conditions like Rachel’s are often invisible disabilities. “Without her bag, you wouldn’t know she had one,” explains Niamh. “This can make things difficult, like when we need to use disability restrooms to change her bag. People don’t always understand why we’re there.”
Despite the challenges, Rachel is now thriving and is the “happiest and healthiest she has ever been.” She is also very independent, “now doing her own stoma bag,” says Niamh.
Rachel’s family are deeply grateful to the team at Children’s Health Ireland, particularly Professor Alan Mortell and nurse Mary Kearney, who went above and beyond for Rachel.
Niamh said, “The team in Crumlin was amazing! We are forever grateful to them.” She explains that the experience of having a child in the hospital was overwhelming, especially the initial emergency transfer to get Rachel to Crumlin and the long stays. However, the kindness of the medical team and hospital services made a significant impact.
Rachel and her family have been involved in numerous fundraising efforts to raise vital funds for Children’s Health Ireland hospitals and urgent care centres. In September 2024, Rachel participated in the Cork 5K mini marathon, completing it in just 50 minutes!
Rachel’s journey has also connected her and her family with other children facing similar challenges. Niamh explains how important it was to speak about Rachel’s condition, breaking the stigma around bowel conditions. She has also established a WhatsApp support group for families dealing with similar conditions.
The WhatsApp group has become a great source of support, offering parents a safe space to share their experiences, ask questions, and seek advice from others who understand their challenges. Through this, Niamh and Philip have friendships for life with other parents who are in similar situations as them, while Rachel has formed lifelong friends with other children who have faced medical challenges similar to hers.