Twins are renowned for sharing a bond like no other cohort and for Evan and Ethan, they’ll have an astounding story to share that few survive at birth.
After five miscarriages and a single IVF embryo transfer, Ethan and Evan were the surprise siblings seven-year-old Samara and her parents had been waiting for.
However, the road ahead was nothing less than a tsunami of unremitting disasters.
This Christmas, Evan and Ethan’s mum Kristen Bayliss is sharing the family’s story after accessing Wishlist-funded support services in hospital.
“At 16 weeks we received the devastating and fatal diagnosis that our ‘Baby A’ (Evan) had a bladder obstruction and there was no saving him,” Kristen says.
“Generally, if Evan had been a singleton pregnancy, doctors would have strongly suggested termination as babies with his condition would be unable to survive without functioning kidneys and lungs.
“Being an identical twin who shared a placenta with his brother, I would have to carry Evan to term knowing that he would not live once he was born.”
Miraculously at the 20-week mark, Evan’s ultrasound showed that his bladder had spontaneously emptied, meaning that the obstruction had cleared, however doctors were unsure about damage to his kidneys.
“We prepared for the worst and the plan was to keep the babies in as long as possible so that Evan would be big enough to go on dialysis upon birth if needed.”
Disastrous it was – the babies were suddenly diagnosed with spontaneous TAPS (Twin Anemia Polycythemia Sequence) at 25 weeks – a potentially fatal diagnosis for both babies.
“I was immediately hospitalised at 28 weeks at the Mater in Brisbane and the next day Ethan received an in-utero blood transfusion in the hopes that I could continue with the pregnancy until at least 32 weeks.
“Very quickly, Ethan passed all the new blood off to Evan and the situation became dangerous for both babies and so Ethan and Evan were born via emergency C-Section at 29 weeks on December 1, 2020.”
Ethan weighed just 1146g, while Evan weighed 1400g.
“The boys were placed on C-Pap and whisked away to the Neonatal Intensive Care Unit (NICU). Ethan received his second blood transfusion that night to rectify his severe anaemia and Evan had a urinary catheter placed until doctors could assess whether his kidneys were working.
“The next five weeks were spent in the NICU, almost uneventfully as the boys grew and fed. Evan was baffling doctors with his very good kidney function given his terrible diagnosis in utero.
“As things seemed to be going smoothly, I took my first break from the NICU in Brisbane and came home to the Sunshine Coast for one night to spend New Year’s Eve with my husband Jarrad, our daughter Samara and our friends.
“I was driving back down to Brisbane when I got the phone call that Evan was sick with an infection. By the time I arrived, Evan was being intubated and within another hour after my arrival, doctors and nurses swarmed around him trying to get IV access as his body started to shut down. He had contracted a urinary infection and was turning septic.”
Kristen said the next 15 hours was the most “horrific experience” as they was little hope Evan would survive.
“His condition was described as incompatible with life.
We said goodbye to our little Baby A again and for 15 hours we sat by him.”– Mum Kristen Bayliss
In the weeks that followed, Evan came off life support and thankfully his organs started to recover but his leg was badly damaged. During this time Ethan was discharged from the Neonatal Unit and spent the next three months on full time oxygen to help his premmie lungs, and Evan joined his brother after almost 90 days in the Neonatal Unit.
In February 2021 the boys were transferred to the the Sunshine Coast University Hospital.
“After spending more than half of their lives in hospital in the first six months, it becomes a huge burden on our family. We spend a lot of time apart from each other (my husband and our daughter) and everyone misses out on so much. Not even being able to enjoy something as simple as the sunshine on a weekend because you’re on the ward again can become very emotionally draining.”
“Support services that Wishlist provides are a huge deal. Distracting both the children and their families from their surroundings is so important when you’re a frequent visitor to the hospital.
“Little Evan has started to show signs of trauma even at his young age after being in the hospital so much, so there’s nothing better than seeing your baby finally crack a smile when a Clown Doctor sings a silly song or a gorgeous therapy dog lies down in front of him for a belly rub.
“The boys have just turned one and are the happiest little humans I know. Sunshine Coast University Hospital has become our second home.
“Ethan (our tiny twin) has thrived and is now over 2kg heavier than his brother. He continues to be closely monitored for his ‘premmie’ lung condition and the potential effects of TAPS, but all in all, he is doing very well.
“Little ‘Evan Almighty’ is just superhuman. He has defied odds time and time again and he truly is something special. He has a long road ahead of him with his kidney issues and years of rehab and surgeries on his leg.
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