Firstly, we had to make sense of the situation for ourselves by processing all the medical information. We have no medical background so it took a while to get around the terminology on the scan report and work through what was said to us. A good friend who is a doctor was extremely helpful in this regard and also helped us develop questions to ask at future appointments. Later on we began to appreciate that even the scan reports were medical OPINIONS – and the value of getting at least one other opinion when you’re dealing with a serious situation.
Although the sonographer had warned us about trawling around on the internet in terms of what we might find, we did find it useful to read the stories of others who had been in similar situations in terms of pregnancies with a poor prognosis. We learnt about a concept called “carrying to term” despite poor prognosis (instead of aborting based on such news from antenatal scans), and immediately identified with this approach. There was a real sense of “no regrets” as people had savoured every minute that they had been blessed with their babies. There were creative and beautiful ways in which these lives had been recognised and remembered as being significant to their families through memorials for both those who had been born alive and those who hadn’t. The stories we found were mostly for babies with Trisomy 13 or 18 whose conditions are considered “incompatible with life”. Our situation was more uncertain - while the complication of hydrops meant that the prognosis was very poor, there was no diagnosis or case to compare it to. So we really had to chart our own course. Fortunately, Rich and I were on exactly the same page about continuing with the pregnancy. This may be the only baby we have and so we would treasure this life.
This is a good opportunity to honour my husband! Two days after the scan, we were lying in bed having spent most of the weekend at my sister’s to pass the time and not think too much. I said to Rich, “how are you feeling”? He replied, “I am just so filled with compassion for this poor baby, it’s in such a terrible state”. To be honest, I really hadn’t thought about the baby at all! It may have to do with the fact that 13 weeks into a pregnancy is so early – you aren’t necessarily showing yet and despite the mild symptoms I didn’t have any tangible experience of being pregnant. All I was thinking about was how I thought it was perfectly appropriate to start drinking champagne and eating sushi again! But inside me was a tiny being, that was sick and most probably going to die.
That night a visiting preacher, Michael Ramsden, gave a message on “Christianity of convenience”. It was an exceptionally challenging message. He spoke about how many are Christians because Christianity produces good outcomes for society. By following biblical wisdom, for instance, your children should be more disciplined and able to achieve success in life. He then spoke about the message of the Good Samaritan – about being inconvenienced for the good of one who is despised in society. I realised that I had become so ‘busy’ that I seldom stopped for anyone anymore, I couldn’t really afford to be inconvenienced by getting into something I didn’t have the time for as my energy was focussed on the ‘important’ tasks before me. That is, until, that vulnerable, sick and disabled person was inside me. Not as easy to walk past then, is it? And I realised then, that I had an opportunity to care for a life which was highly esteemed in the eyes of God, even if many would have discarded her or would look past her so that they don’t have to be made uncomfortable by the imperfections and weakness of another.
My sister-in-law sent me an amazing book which told the story of a lady in the UK whose baby had been declared “incompatible with life”. The difference with this story is that the diagnosis was clear right from the start and that the baby would definitely not survive birth. However, her thoughts and emotional journey taught me so much. She describes her experience praying to God, and clearly hearing Him say to her “inside you is a sick and dying child. Will you care for and carry this child until I take her from you to be with me?” The beauty of this attitude struck me and inspired me – the dignity that was bestowed upon her daughter. We wanted the same. We wanted to esteem our daughter, though we knew her body was not ideal by earthly standards. We wanted her life to be afforded the opportunity to have an impact – even if her life was unborn. We knew we would never be the same since she came into our lives, but we also wanted to share her life with our community.
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