Emmie's Story

Parents Anna Pendlebury and her partner Matt, from Moseley, were elated when they found out they were expecting their second child and their two-year-old son, Leo, was going to be a big brother. However, Anna’s 20-week-scan showed an anomaly and after further tests and an agonising five-week wait, she and Matt received the life-changing news that their baby girl had a rare and complicated genetic condition called Goltz Syndrome, also known as Focal Dermal Hypoplasia, but doctors were unable to say how this would affect her until she was born. 

Anna, anxious about what the future might hold for her family, was closely monitored until baby Emmie arrived in May 2021, a month before her due date. Emmie spent three nights in the Neonatal Intensive Care Unit (NICU) at Birmingham Women’s Hospital and doctors were finally able to say with certainty that Emmie’s condition would affect her skin, hair, nails and teeth, plus vision and hearing. Typical of Goltz Syndrome, Emmie was small and doctors confirmed she had holes in her heart and a swollen kidney. 

It also became clear that Emmie’s condition meant she was finding it difficult to swallow. Just over a week after being discharged from the NICU, Emmie was admitted to our hospital, having lost more than 10 per cent of her birth weight.  

Anna said: “We knew that Emmie would eventually need care for her condition at the Children’s Hospital but we didn’t expect for that to be so soon. I was breastfeeding Emmie but because she was struggling to swallow, it just wasn’t enough so she had to have a nasogastric tube fitted for extra nutrition. 

“We knew we would be in the hospital until Emmie gained weight, and while we were there I continued to breastfeed and the nurses taught me how to safely feed her using the tube.” 

Newborn Emmie spent a week in our hospital and Anna stayed with her, rarely leaving her side but she missed her little boy, Leo, so Matt brought him to the hospital to see his mummy. 

She continued: “Emmie’s stay in hospital was towards the end of the last lockdown and there were still restrictions to keep patients safe. It meant Leo couldn’t come up onto the ward and see Emmie, but there wasn’t really anywhere else we could sit together either. 

“In the end, we found ourselves a spot on a wall outside the hospital’s Emergency Department and had a little picnic outside. I was happy because I’d seen my little boy, but looking back, it’s a such shame there was nowhere inviting in the hospital for us to sit together as a family that may have helped Leo understand that his baby sister was in a special and safe place.” 

Since her first visit, three-year-old Emmie has been admitted a number of times for various surgeries, but also returns to our hospital for regular check-ups and consultations. 

Anna said: “Usually on hospital days, we’ll be visiting for multiple appointments but sometimes there can be quite a gap between them and we’ve had instances where it’s been really difficult to keep Emmie happy and entertained, to make sure she’s receptive enough by the time she sees the next doctor. You never want to wander too far from the waiting room but if there was somewhere bright and welcoming on site we could visit for a change of scenery, or activities to do to pass the time, it could really make a difference to a child’s mood.” 

Our It Starts Here Appeal will change the experience of our families. The current entrance way will be transformed into an open, welcoming, child-friendly and exciting place, where families can go to decompress or spend some time with their children before or after appointments. It will help make the hospital a fun, enriching and joyful place to be, instead of a scary or clinical one.