Produced in collaboration with SBS Ukrainian
TRANSCRIPT
Oleksii Sak and his wife Iryna are celebrating with their baby girl Jolie. She’s just turned one year old.
It’s an important event for any parent – but for this family it’s a crucial milestone.
“It's the best present for this Christmas. We are so happy. It's so beautiful.”
At just 20-weeks old, during a routine prenatal ultrasound, doctors discovered a large mass growing on Jolie’s tailbone. Dad Oleksii explains.
“They explain us that our baby has a tumour on the backside and they say this tumour is growing too fast because it’s approximately maybe one centimetre per one week. It's very hard time for us. Because we cry, we have big stress, so upset”.
Jolie’s condition is so rare, it occurs just once in every 27-thousand pregnancies!
Dr Amiria Lynch is director of paediatric surgery at Monash Children's Hospital.
“We could see that there was this mass growing off the tailbone of the baby that was at that point still in mum's womb. And we know that that can really only be this one diagnosis, which is called a sacrococcygeal teratoma. Jolie's teratoma was of a subtype that's called mainly cystic. And what cystic means is like water”
As Jolie grew, so did the tumour. Without medical intervention, as Dr Lynch explains a full-term delivery would be almost impossible.
“The tumour was about one third of her body size and it was now getting bigger than the head. And the head is meant to be the biggest part that needs to be delivered. But instead we have this tumour. The concern is whether the tumour might rupture during delivery.”
Each passing week was an agonising wait for Jolie’s parents and her two grandmothers, still living in Ukraine’s Kherson – a southern city impacted by the Russian invasion.
“They destroy everything. They destroy hospitals, they destroy buildings where civilian people live. Yeah, so many lives and the problem is they still continue, nothing stops.”
At 38 weeks, doctors decided to deliver baby Jolie by caesarean. But first, as Dr Lynch explains, specialists had to shrink her tumour.
“If it ruptures during the birthing process, it can actually be a critical emergency and can lead to fatality if it bleeds from that. So, they actually removed 600 millilitres of fluid from the biggest cyst just prior to making the incision for the cesarean section. And what that meant is that the tumour was now smaller than the baby's head and was able to be safely delivered.”
It was an emotional moment for the couple, holding their newborn for the first time.
“I'm little crying of course because my baby girl. It's amazing feeling. It was amazing - and we were so happy.”
But the threat to Jolie’s life was far from over. Mum Iryna is a qualified general surgeon and understood the danger when, 3 days later, surgeons operated again to remove the tumour itself. Dr Lynch explains.
“One thing is bleeding. They sometimes have a very big blood vessel attached to them, and if we don't safely control that blood vessel, there can be quite a lot of bleeding that can sometimes be catastrophic. So, we are very paranoid about that and go very slowly and carefully. But the other important thing is that the sacrum or the tailbone is the powerhouse where all the nerves come out to manage your bladder and your bowel function. So, we also need to make sure that we don't damage any of those structures while we remove the tumour.”
After four hours of surgery, Jolie’s tumour was finally gone.
“It was fantastic and I'm so proud of Monash Health for the team that we put together for this. We're the only hospital in this state and probably one of only two in the whole country that could deliver this kind of care.”
To thank the paediatric surgeon who saved their daughter, Jolie’s parents chose Amiria as her middle name.
“We so appreciated to all staff, especially of course to our doctor Amiria Lynch, she amazing person and amazing doctor of surgery. And after that day, I think she become our family.”
It is a gesture Dr Lynch describes as deeply touching.
“That's a first for me. And as someone with quite an unusual name, it feels very much more recognizable and yes, it is an absolute honour.”
Jolie has recovered well, and Dr Lynch says so far the surgery has been a complete success.
“Her progress so far has been everything we could hope it could be. I'm hoping that she goes on to have a completely normal life. There will be one marker, cos she'll have a slightly wobbly bum shape.”
Confident their troubles are far behind, this Christmas Jolie’s parents have plenty to celebrate!
“She moving, she can lift her leg up, lift down, try to walk and everything. We are so happy. Before our baby we were, we just couple. Yeah, wife and husband. But after that we become parents. We are so happy – she’s so happy”.
