In 2012, Michelle and Steven Macaulay found out they were expecting their second baby and were thrilled. However, when they went for their 12-week scan they were told that their baby was “incompatible with life” and was not expected to live past 20-weeks.
According to the Daily Record, the couple was advised to have an abortion on multiple occasions. Michelle said, “To be told by a consultant the baby was incompatible with life was just horrendous because, looking at that screen, there was a life already started. It’s just an awful term to call anyone, let alone a baby growing inside of you.”
Thankfully, the couple refused abortion and in May 2013, Carla Belle Faith Macaulay was born at 36-weeks via Caesarean section.
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Michelle said, “The birth was awful. I was put in recovery and I didn’t see Carla for about eight hours. One of the nurses fought for me to be able to go and see my baby. I was thrilled when I did see her.”
She continued, “I was just desperate to go into the incubator and hug her and tell her everything was going to be fine, that the hard part was over. It was probably actually just starting but, for myself, it was a feeling of relief she was here.”
After Carla’s arrival, doctors tested her for Down, Turner, Patau and Edwards Syndromes but they all came back negative. Now doctors describe Carla’s condition as an undiagnosed genetic dysmorphic syndrome and refer to it as a syndrome without a name (SWAN). Currently, Carla is apart of the Deciphering Developmental Disorders study, which means she and her parents will have their genome tested.
Michelle said: “They have absolutely no idea what she has, which is why she is now part of the study. Babies like Carla are so rare. The experts say she could be the first in the world like her so they can only hope to learn from her for future kids.”
Additionally, at 5-months-old Carla developed a rare form of epilepsy known as West Syndrome. This led to major setbacks in Carla’s development causing her to be about nine months behind other children her age. Michelle said, “Carla’s not walking but she started crawling and pulling herself up in November – things we were told she would never be able to do. She will develop and then she might plateau for a long time. She can eat normal foods but she can’t feed herself. The physiotherapists are really confident that she will walk and they’ve always been quite positive.”
Remarkably, Carla is approaching her second birthday and has proved all of the experts wrong. Michelle concluded, “Carla interacts with us and her big brother, she plays with normal toys, she smiles and laughs. She’s amazing. I’m so glad we didn’t listen to what we were told because we couldn’t imagine life without her. She has taught us so much. It’s been a journey but she’s been worth it.”
