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 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 PMH 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 daunting prospect.
“Fear was our overarching emotion at the time,” recalls Leana.
Fear of the unknown caused our minds to go blank. We couldn’t think straight or speak. We just sat and waited quietly for Evelyn to come out of surgery and to be told 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. Having a child in NICU doesn’t make it easy to think of the future or reflect as every ounce of energy, whether emotional, physical or mental, is focused on your child getting through the day.
“The whole experience is almost indescribable. It was exhausting, more than you could possibly imagine. PMH is wonderful and NICU team in particular are amazing. Every person we came in contact with was so caring and understanding. We were always impressed with the way they responded to every situation and constantly made us feel like Evelyn was their only patient. We are so lucky to have a wonderful place like PMH to care for our children. PMH staff are fantastic at what they do; we owe them so much.”
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 child.
Leana once again explains.
“It’s incredible to us that the drama of her first few months of life is all in the past. Today Evelyn is doing beautifully. She doesn’t have a belly button, so that’s a reminder of all she has been through. She also has a few small scars which shows just how strong our little miracle child is.”
You can help children like Evelyn by making a donation today