Pastoral Support - ethical issues and counselling

We were very touched by the response of our church’s elders. The reason we told them immediately, apart from our relationship with them and need for prayer, is because we knew that our situation contained a number of ethical issues which we may need to engage them on. The decision about whether to continue with the pregnancy or not – fortunately, was never a question for either Rich or I. We believe that God is the author of life and we were not prepared to make a decision that would end a life. But that’s not the only decision to make in such a pregnancy. With all the technological advances of this age, there could be other decisions to make in terms of how far we should take medical intervention. We knew that the baby had to make it to viability (26 or 28 weeks) before these kinds of decisions were to be worked through… but they loomed on the horizon. We also recognised that we wanted to access support immediately in terms of dealing with grief, given that we were told to expect loss ‘any day from now’, and so we began pastoral counselling.

Communication and Community

We had a list of people that we were waiting to tell that we were pregnant but we no longer had good news to share. We decided that we wanted to be upfront with everyone about what we were facing. Given the sensitive situation, we wanted to tell our community personally rather than have people hearing an incorrect message through the grapevine. We would outline facts as well as our response to the situation. We decided to focus on the complication of hydrops which was expected to be fatal, rather than the other problems that had been picked up. It was really important to us to preserve the dignity of our daughter – if she was going to die, did people need to know that she didn’t have arms? We loved her from the moment we knew she existed and wanted to convey this and value of her life. We also didn’t want people making comments like “well, if your baby is going to suffer physically then maybe it’s better for everyone if she dies” because regardless of her physical condition she was our daughter and if we lost her at any point we would be devastated. Knowing that people would question whether we would have an abortion, we wanted to be clear that we had decided to continue the pregnancy. This is what we sent out:

“Just wanted to share some news - we're pregnant, though it’s been a bittersweet time.  The 13 week scan revealed that our baby is in an extremely concerning condition, with severe hydrops fetalis.  There is no specific diagnosis of the cause at this stage, and this may still take months to become clear, if at all. The prognosis is poor, meaning that there is a very high likelihood of either miscarriage, stilbirth or infant mortality. We are continuing with the pregnancy and while we don't know what the weeks and months ahead hold, we think it is better for friends and family to know upfront the condition that our baby is in. While this has been quite a shock, we are confident that by the grace of God and with the support of our community, we can walk this out one step at a time and be the richer for it. As Romans 5:2 says, "...we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." We have certainly known God's grace, strength and provision so far in the journey.

Telling people what was going on was really helpful – by and large we got great responses to our email and although it was hard putting our news out there, for us the support it generated made it worth it. This became a lesson we learnt along the way – walking a journey out in community is incredibly demanding but it’s necessary and worthwhile. We never put pressure on ourselves to respond to people’s requests for information and updates (in this information age, people are relentless for news with seemingly little appreciation for how much energy it takes to process the information yourself and put it out there when you’re actually just trying to cope with a difficult situation!).

In terms of our first email, we learnt quickly not to judge people based on the initial responses and come to any premature conclusions about who would walk this journey with us! We read a grief journal on the internet of a mother who had lost a Trisomy 18 baby girl after 5 days of life. She shared some amazing insight two years later – she realised that different people played different roles in her grief journey. While it was hard not to be angry with those who either avoided the topic entirely or didn’t manage to connect with them when they were going through the toughest emotional times, some people were really able to enter her space and be there… others may be the type who can’t necessarily talk to you about the situation but you can have a hilarious evening out with them (which is also really important!). Both of these types of people, and every variation inbetween, are important and valuable in the journey to recovery. I thought that if we could take her lesson learnt and apply it right from the beginning we would be better off for it.

This was just the beginning of our journey in learning to be strong in grace. Gracious towards others, and gracious with ourselves. We are not going to walk this journey perfectly, and that’s ok. Similarly, those around us are not going to respond perfectly. Other people also have the right to be shocked as we were when we found out, they may also take time to learn how to handle the situation well, and we need to appreciate what they also have a process to go through in this regard.  Continuing with the pregnancy was a clear statement of our faith in Jesus – which may not be embraced by those around us. We have to accept people’s right to their own opinion – in the same way that we expect them to respect ours. I write this as if it’s easy to live out – it really isn’t, and has by far been the most challenging part of the journey. Hopefully it will be an area where we’re able to grow the most.

Responding to a pregnancy with ‘poor prognosis’

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.

The 13 week scan – this is unbelievable!

The first 3 months of my pregnancy were pretty uneventful. I had the usual craving for savoury foods, and definitely felt tired but other than that I was well. I was also surprisingly emotionally stable and relaxed – so much so that I think Rich thought that the best thing he ever did was get me pregnant! I had experienced a miscarriage the year before so was sober in my expectation of the first trimester knowing that it’s common for little ones not to make it. We had been for a 6-week scan, and had the privilege of seeing our child’s little heart beating strongly and full of life.

The night before the 13 week scan, I was suddenly besides myself. I hadn’t been consciously fearing it but I was now emotionally distressed. I consumed 3 endearments and half a litre of coke just to get myself to the scan the next morning. We had an initial chat with the sonographer which didn’t raise any alarm bells and then began the scan. The sonographer could tell immediately that there was something wrong - the baby was swollen, its skin pulled away from the body. She didn’t carry on for too much longer as she wanted to get a more senior sonographer in, but she wasn’t available at the time. We went back that afternoon for a scan with the senior sonographer who told us:

-          The baby was severely hydropic (swollen). The upper side of normal for the fluid behind the baby’s neck for a baby our size is 2.5mm – but our baby’s fluid measured at 12mm.

-          There was a VSD hole in the heart

-          There was fluid in the heart and lung cavities, stomach, and all around the baby

-          The forearm bones could not be detected, the upper arm bone was tiny

-          The femur was short

-          There may be a club foot

-          Appeared to be female
-      That the condition was lethal

The swelling indicates that there is something wrong with the baby’s development. For babies as severely swollen as ours was, the prognosis is very poor. Hydrops has many different causes, but aside from the underlying cause of the swelling, the heart comes under severe strain from all the excess fluid ultimately resulting in heart failure. The complication of hydrops when it is as severe as this is generally considered to be fatal. There were obviously other problems but the life threatening feature was not the hole in the heart or the skeletal concerns but the excess build-up of fluid.

The sonographer was extremely concerned about the condition of the baby and thought it was surprising that I was still pregnant. She said I had an 80 – 90 % chance of miscarriage and called the hospital to tell the gynae on call that they could expect to see me in the next couple of days. She did a CSV to send for testing and said there was “enough here to offer termination”, but she did not put any pressure on us. It was still early in the pregnancy – a pregnancy they did not expect would go much further anyway.

We also spoke with our gynae and a geneticist. The geneticist gave us very helpful counsel right at the beginning by setting our expectations for testing of any sort – she said that the test results and future scans may or may not give us more information. While a diagnosis is helpful for future pregnancies, we may never have clarity on the diagnosis and the condition of our baby was such that prognosis was extremely poor. Our gynae introduced the idea of “reducing trauma” by terminating the pregnancy, an idea we would hear more about further down the line.

My family were in disbelief when I told them. A year before, my sister had given birth to a little girl with Down Syndrome although this was only picked up at the 23 week scan. As a family we had already experienced this kind of difficult pregnancy news – so it wasn’t hard to believe that these things happen, but it did seem unreal that it had occurred to us sisters in such a short space of time! However, we were really helped by what my sister went through. The journey of her pregnancy, birth and life of her gorgeous daughter meant processing many emotions and developing an appreciation for life even when it is not what we expect it to be. So we did not have to start from zero.

We went away for two weeks after the 13 week scan. “Fortunately”, we happened to both be unemployed at that point and had been planning to go away anyway. We had the time and the generous provision of a beach house to go to. There we collapsed and started to absorb the shock of the news of this baby. I could barely go for a walk I had so little energy. Rich took such good care of me. He cooked and cared for me. We read, and cried and slept… and after two weeks we felt we had enough energy to come home. During this time, we were blessed by many acts of kindness – a friend flying in from Durban to spend the day with me, friends cancelling plans and coming over to hear about the scan, others driving out to where we were to deliver meals, people sending us gifts from far away, beautiful letters and phone calls… and we began to appreciate  the beauty of love and friendship that somehow only reveals itself in the most challenging times.