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Tilly's Story: Part 4 - A Glimmer of Hope

A week later on my 29th Birthday, now 22 weeks pregnant, we travelled back up to Newcastle truly believing we were in store for a day's counselling about having a termination. I was scanned again by the Professor and very little had changed. The MRI scan had indeed confirmed the diagnosis. It also confirmed that the tumour was very vascular and had an artery leading into it meaning the prognosis now was even poorer. There was still barely any amniotic fluid but he said there was probably just enough for her to survive.

We were then met by a paediatric surgeon who told us that if we managed to make it to 32 weeks and he was handed a "healthy" baby then actually she would have a good prognosis and would go on to lead a normal life. We were told he would operate on her about 2 weeks after she was born and although the surgery would be extensive, she would probably fully recover. We finally had a glimmer of hope. This was the best news we could have hoped for on my birthday.

Of course the risks Professor Robson had already told us about were still there but hearing such positivity from the paediatric surgeon made all of those risks worth it. We then of course decided to continue with the pregnancy and I again let myself believe that I may actually have a baby to take home at the end of all of this.

I'm not sure how the Prof felt about our decision, whether he thought we were foolish maybe, but he supported us anyway. He reiterated to us that he didn't think she would survive the next few weeks and that basically the odds were stacked against us. He told me that with a normal pregnancy, baby's can be born at 24 weeks and have a decent chance of survival but my baby wasn't normal and this was therefore pushed back to 28 weeks. We had to get to 28 weeks to give this baby any chance of survival. I was then scheduled for weekly ultrasounds to check my baby for hydrops, heart failure and to see how quickly the tumour was growing.

So every week we lived for the following Friday, in absolute limbo. Every week we sat in that waiting room with the other expectant mums waiting for our scan to see if our baby was still alive. And every week she was. With barely any amniotic fluid around her, her organs were still developing and she was still growing perfectly. She was fighting away in there despite everything she was up against. Our little warrior.

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