Down Syndrome during Lockdown – ‘Lisa was the third parent we needed” | News

It’s World Down Syndrome Day 2023 and we’re sharing a moment with Nicky and Blake Edgington, parents from Northfield and their two-year-old daughter, Bailey, who was born with Down Syndrome.

A person with Down Syndrome (or Trisomy 21) inherits all or part of an extra copy of Chromosome 21. Symptoms associated with the syndrome include learning disabilities, distinctive facial characteristics, and increased risk for heart defects and digestive problems, which can range from mild to severe.

Following Nicky’s Non-Invasive Pre-natal Test (NIPT) during the early stages of her pregnancy, the family were told that their daughter would have a 95% chance of being born with Down Syndrome. The family began their journey at our Women’s Hospital and later received care at our Children’s Hospital services. Nicky kindly shares her post-diagnosis story alongside the challenges the family faced during Covid-19 and the many obstacles that the pandemic created.

Nicky, 36, said: “Lisa Bullows was our ante-natal screening lead. She rang me to tell us that my blood tests the day before had shown there was a greater chance of our baby having Down Syndrome.

“She asked me to come in. At the time, we were in the first lockdown, and it meant that my husband couldn’t come to the hospital with me. Our emotions were everywhere. Lisa suggested that we ring Blake, who was sat in the car park, and have him on loudspeaker so that, to the best of our ability, we could hear what she had to say ‘together’.

“She calmly and rationally explained the results and what that meant. When we quickly said that, whatever the results of the NIPT we could have were, we would be continuing with our pregnancy, the biggest smile appeared on her face.”

Lisa Bullows, our Antenatal Screening Lead, supported the family throughout the continuation of Bailey’s journey from birth and beyond.

Nicky said: “When she rang again two weeks later, with the news the NIPT showed that Bailey had a 95% chance of being born with DS, she again invited me in, with Blake on the phone, to see if we had any new questions. Again, she listened, helped and advised. She was so warm and caring. We felt at ease. From that day on, she was at every scan, including arranging a scan that Blake could attend in Fetal Medicine to hear the heartbeat. She would message in between to check how we were.”

 Lisa supported the family, going above and beyond to help them through their tumultuous journey.

Nicky said: “She even gave up her annual leave to be at my caesarean section. Which was a huge relief as the day before, my husband had tested positive for Covid and wasn’t allowed. She was the first to hold Bailey and told me how beautiful she was. She held me together in the following four days, while I was kept in isolation away from my baby who was at the Neonatal Intensive Care Unit (NICU) and my husband was at home. She visited Bailey, took her gifts, rang from the NICU for us to FaceTime. She was the third parent that we needed.

“When we finally got to meet our daughter properly, she was four days old. All because Lisa fought for us. During our six-week NICU stay, she visited every day in her lunchtime.

“To this day, we speak almost weekly. We call her Bailey’s Fairy Godmother. She will always be a part of our lives. She has been writing a policy to mirror to care that she offered us to any other parents who receive a high chance result. We couldn’t be more thankful for her and proud of everything she does.”

“Bailey is now two years old and is truly wonderful. She is in nursery four days a week and thriving! She did have a tough start with two major surgeries but came home from the Children’s Hospital for good at five months old and hasn’t looked back since.”