One in five children in Western Australia has a respiratory disease. It is the leading cause of hospitalisation for children…
Nicola and Steven’s twins, Harper and Arthur, made a dramatic start to life 15 weeks premature. Rushed to the Neonatal Intensive Care Unit at Princess Margaret Hospital, they have been receiving around the clock care.
When Nicola woke on the morning of 8 December last year, 24 weeks and five days into her pregnancy, she had a slightly uncomfortable, low level pain, but didn’t think much of it. Within hours she was on a Royal Flying Doctor flight to get her from the couple’s home in Broome to King Edward Memorial Hospital in Perth.
“When I left Broome, neither Steven or I realised the boys were going to born so early,” explains Nicola.
“Me being in Perth and Steven sitting on our bed up in Broome while the Anaesthetist held up my phone so he could be a part of the birth wasn’t how I had imaged we would become parents.”
Steven flew down to Perth the next morning to meet his sons.
Being 15 weeks premature, both the boys were born with a number of health problems.
Harper’s main problem was that he contracted a very tough bacterial infection that affected his already compromised lungs.
“The infection then spread to his blood stream,” explains Steven.
“It was literally being pumped around his whole body. He had a number of blood transfusions and spent eight of the first nine weeks of his life on really strong antibiotics to get rid of the infection.”
“Most babies have a single medical chart that may only be half filled. Harper had three charts on the go and all were completely filled with notes and observations from his doctors and nurses.
“But he’s a fighter. One of our big highlights came 112 days after the boys were admitted to PMH. It was the day we were allowed to take Harper off the ward for a few hours.
“Our first outing as parents was to walk up to West Perth. We got some lunch and went to a little park for a picnic. Such a simple thing, but to us it was magical. We only wish we could have taken Arthur with us as well.
“I cannot begin to describe how amazing the PMH team are. Every single doctor, consultant, nurse and member of the team has done so much for the boys, Nicola and me.”
Whilst Harper is growing stronger, Arthur has struggled a little more. He had a massive bleed on his brain when he was born which caused swelling and led to a condition where cerebro-spinal-fluid (CSF) builds up in the ventricles, or cavities, of his brain making them enlarge. This puts enormous pressure on his brain and causes further bleeds in his left ventricle.
Steven explains Arthur’s treatment.
“Doctors had to put a needle into Arthur’s brain to draw out the excess fluid to relieve the pressure. This happened every day for about two weeks. The whole time Nicola and I were so worried about him getting an infection like his brother did, but on his brain.
“Thankfully the team are so experienced. Every time they withdrew fluid it would be checked, so while we would have a nervous few hours, we were always reassured when his results came back clear of infection.
“The hope was things would correct themselves and Arthur would start draining and absorbing his CSF as normal. But that wasn’t the case. His Neurosurgeon tried a couple of other things, but in the end, had to insert a shunt to ensure fluid drains as it should.”
Arthur’s shunt surgery went well and Steven and Nicola finally felt like they had cause for celebration.
“Our celebration was pretty short,” explains Steven.
“We arrived at the hospital to find about 15 specialists, nurses and consultants around Arthur. The swelling on his brain had increased again and he started having seizures. The doctors also suspected he was going into renal failure as he wasn’t passing urine. Then to top it all off, we were told he had a hole in his heart. The poor little mite was on morphine to manage pain. It was heartbreaking and terrifying.
“The doctors slowly and patiently explained what was happening and went through a range of treatment options with us. It seemed that each condition was affecting the other. It was all really difficult to take in and understand.
“All we knew was the doctors were doing everything in their power to save our boy.
“There have been several times that we thought we might lose Arthur. He would do really well for a few days, then suddenly take a turn for the worse. Every time that happened, the team dove into action and bring him back to us.
“Given all we have been through, we live in the now. When family and friends ask us how the boys are doing, we say something like ‘they are doing ok right now’. There were times when we said they were having a good day, then things changed suddenly – literally in the space of a few minutes. So ‘now’ is where we live these days.
“Right now, Harper is doing great. We have been able to take him out of the hospital and spend time in our little apartment. As exciting as that is, the shine is taken off as Arthur is still in hospital. But he is a fighter too and is getting stronger every day.
“We don’t know what all of Arthur’s medical problems mean for him. It is possible he might have cerebral palsy. He could be blind in one eye and there is also a chance that he may not speak as one side of his vocal cords is paralysed at the moment. But there’s a chance that with time all of these issues could correct themselves. It’s really a case of wait and pray for the best.”
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