Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
While being told her pregnancy was deemed high risk after her 12 week scan was a shock, Leana and her husband Kyle knew that remaining calm and centred would give their unborn child, Evelyn, the best possible chance.
Leana’s 12 week scan showed that Evelyn had gastroschisis, a condition which caused her intestines to protrude through a hole in her umbilical cord. Their GP broke the news and referred the couple to King Edward Memorial Hospital which specialises in high risk pregnancies.
Over the next few weeks, Leana and Kyle learnt all they could about Evelyn’s condition. Many of the statistics they were given
were so frightening that they choose not to share them with others.
“Kyle and I were always very calm about Evelyn’s condition; we stayed level headed throughout most of the pregnancy and that kept the majority of our family the same way. We told family what they needed to know and kept a lot of the statistics and more concerning information to ourselves. We found that having a calm support network made our situation much easier and allowed us focus entirely on the pregnancy and our baby,” explained Leana.
Leana and Kyle’s first meeting with the Princess Margaret Hospital’s Neonatal Team was at the six month mark of their pregnancy. The team took time to explain what Evelyn’s condition meant, the risks associated with it and how they proposed to treat it. They also answered the myriad of questions the couple had.
Knowing that Evelyn would be undergoing surgery to correct her condition within hours of being born was a daunting prospect.
“Fear was our overarching emotion at the time. We couldn’t think straight or speak. We just sat and waited quietly for Evelyn to come out of surgery and be told that she was going to be ok.”
Thankfully the surgery went well. Evelyn was settled into the Neonatal Intensive Care Unit (NICU) for monitoring and post-surgery treatment. She spent the first eight weeks of her life on the Unit. During her time in NICU, Evelyn was placed in a Giraffe Warmer so her temperature could be kept stable and she could be closely observed, X-rayed and weighed without having to be disturbed.
“NICU was an emotional rollercoaster. We would be so excited to see Evelyn each day, but we were also terrified of what might have happened while we were gone.
Quite a few times we would arrive at the hospital to be told that she had become extremely unwell over night so had been moved back to the high care area or have a new machine attached to her tiny body to help her fight through things.
“Eventually we learnt to take each day one at a time, not to expect too much, and to simply listen and learn as much as we possibly could. It was an emotionally, physically and mentally exhausting process. However Princess Margaret Hospital and the NICU team in particular, really made the experience much easier.”
“Every person we came into contact with was so caring and understanding and made us feel like Evelyn was their only patient. We are so lucky to have a wonderful place like Princess Margaret Hospital to care for our children. The staff are fantastic at what they do; we owe them so much. It’s great that the community gets behind supporting the hospital through contributing to the PMH Foundation.”
Since being discharged from NICU, Evelyn has gone from strength to strength.
She will continue to have an annual review for the next few years, but otherwise Evelyn is a happy, healthy two and a half year old who loves drawing, reading and playing with her two younger sisters!