14-year-old Nancy is one of the happiest, most friendly people you could ever meet. She has enviable colouring skills and is a very proud big sister to her three younger siblings.
When Nancy’s mum, Rebecca, was pregnant, a scan picked up a potential issue with Nancy’s heart. She was referred to the foetal medicine unit here at the children’s hospital and there, the baby was diagnosed with Tetralogy of Fallot, a rare congenital condition consisting of four heart defects. . She also had a large hole in the centre of her heart and pulmonary stenosis, a condition where the pulmonary valve is too narrow, restricting blood flow from the heart to the lungs.
With doctors suspecting that there may be a root cause for these conditions, Rebecca and husband, Steve, were given the news that their baby may have Down syndrome, Edwards syndrome, or Patau syndrome and an amniocentesis test was conducted.
When the parents received the call telling them to come in as the news was bad, Rebecca braced herself for the worst. At the meeting with the consultant she asked to be given the news immediately. But on being told that her daughter had Down syndrome, Rebecca’s reaction was relief. “I was grateful she was going to live. I could feel her moving around and she was my baby,”
In the weeks that followed, Rebecca met families with children who had Down syndrome. She was struck by how vibrant and full of life the children were. Rebecca says: “They had so much love to give. So what if they have an extra chromosome? They don’t need to fit into a specific box.”
Nancy was born at 39 weeks, and after a brief cuddle with her parents, she was taken to the high dependency unit. At ten days old, she underwent a cardiac catheterisation with balloon dilation at Bristol Children’s Hospital to help improve her blood flow. After three and a half weeks, Rebecca and Steve were finally able to bring their precious baby girl home.
At ten months old, after started to experience regular blue spells where her oxygen levels would dangerously drop, she underwent open heart surgery again to repair a hole in her heart. She was Now 14, Nancy is awaiting another surgery to replace the valves in her heart.
Over the years, Nancy has been a regular visitor to the Noah’s Ark Children’s Hospital for hearing tests, ophthalmology, speech and language and cardiology. She has also undergone procedures on her ears, and surgery to correct a turn in her eye. Yet through it all, she remains fearless and full of life.
Rebecca speaks fondly of the Noah’s Ark Children’s Hospital, describing it as “a light, friendly, airy space—not scary as you’d expect hospitals to be.” The staff, she says, make children feel like superstars. Nancy loves her visits and is always eager to see which of her friends she’ll meet that day. Rebecca says that the hospital team have known Nancy since before she was born and are like an extended family.
Rebecca hopes to dispel old misconceptions about what it means to have Down syndrome. She says: “People with Down syndrome see the good in everything. They can communicate, love, and live full, rich lives.”
Nancy is living proof of this. She is a shining light in her family and has taught her parents and siblings to slow down, embrace life, and celebrate every moment.
If Rebecca could give advice to any parent whose unborn child has been diagnosed with Down Syndrome, it would be simple: “Just love your baby like you were planning to anyway. There will be no difference—just more love to give.”
#WorldDownSyndromeDay
