Tasmyn Gopfert and Brett Babich, from Ireland, believed their daughter Miley was in good health when she was discharged from hospital after being born but then began crying a lot
Miley at Cork University Hospital
A mum has told how her daughter’s ‘high-pitched cry’ led to a referral to a paediatrician and the discovery of a whole series of health issues.
Tasmyn Gopfert and Brett Babich, from Kinsale, in Ireland, say their daily lives have been ‘engulfed by all-things medical’ ever since they learned their daughter Miley had severe brain damage.
Little Miley was born in August 2023 – two years after her parents emigrated from South Africa – and had to spend five days in an incubator, on oxygen and antibiotics to stay alive. She has been in and out of hospital ever since and is now taking eight different medications a day to manage a range of diagnoses.
When she was discharged from the hospital as a newborn, Miley seemed to be in good health but was thought to be suffering from colic as she cried for several hours every day.
Her parents were concerned she may have underlying health issues and got the first sign something was wrong when she was brought to the A&E at Cork University Hospital because of a high fever. There, one nurse referred them to a paediatrician over what Tasmyn described as her child’s ‘unusual, high-pitched cry’.
Tasmyn said: “It was just such a long journey to find out something. A nurse at the CUH stopped me and asked if Miley’s cry had always been like that and referred us to a paediatrician. I didn’t think anything major of it before. I’m the oldest of nine children so I’d been around kids before, I just saw it as ‘Miley’s cry’.”
A new specialist noticed a strange ‘ridge’ starting to form at the top of the toddler’s head and sent them for two tests, including an MRI and a CT scan. In December 2023, Tasmyn and Brett got the “worst news any parents would ever want to hear” from the neurologist.
The mother said: “We were told that Miley had severe brain damage and that she had a good few diagnoses which are microcephaly (stunted head growth), encephalomalacia (softening of brain tissue) and cerebral palsy. It was absolutely devastating and we really struggled with the news of Miley’s condition.
“We spent two weeks in hospital while they ran a whole bunch of tests, bloods and all the things that go with a new diagnosis. Miley was also admitted for RSV in December too, where she spent six days in hospital – almost right up until Christmas. She eventually got out and we celebrated the holidays at home, just with our small family. After her getting sick obviously we didn’t want to have too many people coming around.”
At the beginning of 2024, things were looking up for the family as Miley was put on new medications which she managed very well. But by February however, she was brought back to hospital twice after contracting flu and then Covid-19, which Tasmyn said was ‘incredibly hard to watch’.
Little over a week after returning home, she became severely unwell once again after having a rare bad reaction to vaccinations. Just a few months later the little girl suffered her first-ever seizure while at her grandmother’s home in Kinsale. Soon after, she was diagnosed with epilepsy.
Tasmyn spoke about the sudden ‘shock’ for her family, saying: “It was so awful. Suddenly Miley stopped breathing and I had to start chest compressions. All my siblings were around, one of who is as young as eight years old. It was obviously traumatising for them.
“When I brought her back she was screaming and gasping for air. My mum’s neighbour is a paramedic so he came over and stayed with us to make sure everything was okay while we waited for an ambulance. Miley’s blood sugar levels were also very low, so she needed the hospital. Now she’s been diagnosed with epilepsy and has to take more daily medications to manage that.”
In recent weeks, the family received even more bad news when X-rays revealed Miley had a very painful case of hip dysplasia. She was further diagnosed with GI dystonia, which causes her severe bowel discomfort. But Tasmyn and Brett say that despite it all, their daughter shows incredible strength, often smiling up at doctors, nurses and her parents from her hospital bed.
“We couldn’t do any of this without our Miley, she’s such a fighter, it’s absolutely incredible. The staff at the CUH have been amazing and work around the clock to help – they’ve told us they’ve never met a child with such a unique case and are even learning from her.”
The couple originally from South Africa and have been living in Kinsale for four years after moving here with their extended family. Tasmyn recently left her job to be by her daughter’s side in hospital and Brett is balancing two jobs to give the family a steady source of income, reported CorkBeo.
Desperate to help them, the local community has set up a GoFundMe page to help support the family. The ‘Miley Movement’ campaign – set up by Tasmyn’s manager and ‘best friend’ Michélle – aims to help them with bills and gather funds to build an accessible bedroom for their daughter.
Almost 6,000 euros has been raised for the family to date, and the parents say they will ‘never be able to show enough gratitude’ for the public’s donations. Tasmyn said: “I was in disbelief that we had, or should I say Miley had, such a big army behind her. We didn’t want people to feel the need to feel sympathy for us. The whole situation is emotionally draining and we’re in such a vulnerable place, but knowing there’s such a large group behind us is so incredible.”
