Bowen's Story
Bowen Michael Kimberley-Mastalir was born on the August 24, 2004, a strapping ten pounder, at Figtree Private Hospital. Jeanette King, the wonderful midwife who delivered him, was concerned with his distended belly and asked Dr. Brereton (his pediatrician) to check him first thing the next morning. Dr. Brereton ordered x-rays immediately and found a large blockage in his bowel. Bowen was then taken by ambulance to the Royal Women’s baby special care unit with me following in another ambulance. He had separated my pelvis during delivering, so I was unable to walk. More x-rays were taken and attempts to flush out the blockage proved futile, hence Bowen’s first operation at the ripe old age of one day. The first op was to hopefully access the meconium (black, sticky first poo) blockage through the lesion created by removing his appendix. This was not successful, so a new lesion was made closer to the blockage and it was then squeezed out, he was sewn back up and sent to special care recovery. This is when we were first told that, pending test results, it was likely that Bowen had CF. We were stunned, horrified, even disbelieving. Six days later, when Bowen was coming out of intensive care and starting to breathe and function on his own, his bowel burst. Our poor sick, swollen baby was urgently sent back to surgery. He was cleaned out and his small intestine was cut with both ends sewn outside of his belly. This meant that Bowen pooed from one end into a bag while the lower end was left to recuperate.
Bowen was extremely ill after this major operation, so he remained at Sydney Children’s Hospital (Randwick) to recover in intensive care. He lived on morphine, madazalam, saline lipids, countless machines and the one-on-one singular focus of his own intensive care nurse, 24 hours a day.
You wouldn’t think an unconscious baby would take a lot of work but his nurses were always doing something. If they weren’t changing his tubes and wires, they were restocking his drugs or gently cleaning him, noting his vital signs from machines, readjusting the machines, replacing equipment, the list went on and they were never still. It is definitely “intensive” care that keeps these little ones alive. This is when we met Bo-bo’s CF specialist, the wonderful Dr. John Morton, who really helped us come to terms with CF.
Bowen finally recovered enough to be moved to one of the children’s wards. We learnt more about CF, all his relevant medications and how to apply them; we learnt how to give him his daily physio and how CF would affect our family and everyday life. We attended his first CF clinic while he was still in hospital.
Bo-bo came home for 6 weeks where we battled ill-fitting poo-bags that leaked and caused severe nappy rash. They often took over an hour to change. We held a fabulous charity wine dinner for the CF clinic that you wonderful people contributed in one way or another…thank you, thank you, thank you. We raised more than $5000 for the clinic. Being at home was of great benefit to Bowen, he thrived well and put on weight. His pediatric surgeon, the dashing Dr. Guy Henry, was delighted at Bo-bo’s recovery and the surgery was booked for Melbourne Cup day. Back to Randwick Bowen went and under the knife again but this time without life-threatening urgency and intensive care. He was back home 6 days later and has been thriving ever since. He’s so fabulously beautiful and happy that we often have to remind ourselves that he has got a severe case of CF and it won’t always be smooth sailing.
