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.