Sharing the Sarah Hope story

We continued to tell more and more people about the pregnancy.

“We've named our daughter, Sarah Hope, and are really trying to enjoy the time that we have with her. We’re always in a bit of a state before a scan, wondering if the little heart is still going... but we're enjoying being parents, albeit to an unborn life, and have started trying to build memories and prepare for her birth in a way which will be hold no regrets and be helpful for any grief process we may need to go through. Her life, even if it is really short, has had a wonderful impact on us and we have much to be grateful for. We certainly believe that the situation could be reversed and that she could be healed through an extraordinary miracle (and it would need to be an extraordinary one!). At the same time we're not putting our hope in a particular outcome but rather putting our hope in God and that his grace will be sufficient, no matter what the path is that He chooses for us. We've had to work through the fear of Sarah Hope making it to full term, but being severely disabled and what that would mean for us. We’re learning what it is to fear God and not fear particular outcomes (miscarriage, maternal health complications, stilbirth, disability etc). We've been getting great support on a range of levels, which we're really grateful for.”

Sharing our experience was powerful in that people responded fully, telling us how they were, being very open to the challenges they themselves were currently facing. It was a beautiful time of sharing honestly and we treasured how we were able to connect with old friends, even if just over email, during this time.

We had another significant community moment when we shared our story with our church small group. I spoke about the medical details and how the pregnancy had progressed as well as what had been challenging in the journey. Rich spoke about our theological response to the situation. Our community wept with us regarding the challenges that lay ahead, but felt so privileged that we were sharing it with them and allowing it to be a community process. They commended us for the way in which we were walking things out and prayed beautifully as well. It was such a God-centered evening, it was not really even about us or the baby, but a stunning offering to God from all.

We also had a very special time of prayer with the elders of our church. They really took the time to listen to us, and prayed for us. We felt so covered by their love and humbled by how they had served us.

22 week scan – preparing for the end; creating memories

At 22 weeks, I went to my gynae for a check up. As for all these appointments, I went in armed with my latest list of questions. At this point, I was thinking about the fact that I needed to be ready to go into labour and given that this could happen anytime. I wanted to find out about labour, how the hospital works, whether you were given a chance to hold the baby once you’d given birth to it etc. From what I had read about mothers who had had late miscarriages and stillbirths, the opportunity to hold your baby and have time to say farewell seemed really important to the grief process.

My gynae looked at me as if I was mad! She said to me that the biggest concern she has is that I would not go into labour. That the baby would die and somehow we are going to need to get it out. It was a hard consultation with her and a rather abrupt reality check. She told me the baby is not going to look very nice and would I really want to see it? My sister came to the appointment with me, and asked the gynae how long you would stay in hospital for after delivery. She said you would need to be there for 6 hours after giving birth for observation, then you could go. That was that. She had a quick look at the baby and admitted she didn’t see it getting to viability.

That night I didn’t have time to chat to Rich about it as I walked with a friend after work and then I went out to lifegroup (church small group). I cried myself to sleep. I didn’t want to wake Rich up to talk things through with him as I knew he really needed his sleep and was dealing with a lot of pressure at work. But then I felt Sarah Hope move… it was so beautiful. She kept me company through the night, moving about inside me. I felt so loved by God for having her and greatly appreciated her presence.

Sometimes I wondered how many people I interacted with, be they medical professionals or friends and family, believed that deep down this was unwanted pregnancy that I did not have the courage to terminate. That was NOT the case! This was a life we had been blessed with, we WANTED her. We wanted to experience her life, we wanted her life to be afforded the opportunity to touch ours, we wanted to meet her, hold her, comfort her and enjoy her. Sarah-Hope was NOT a religious principle, a law we had to obey, a duty we needed to carry out regardless of how we felt about it… she was our daughter, who had been knit together in my womb, whom we loved.

I met up with the pastoral counsellor and told her all about the latest scans and what the sonographers and gynae had said. I explained what I was hoping for in terms of having the opportunity to meet my child, and create memories with her even if she wasn’t alive at the birth.  The pastoral counsellor had worked as a midwife years ago and graciously and helpfully explained to me the reality of giving birth to a baby who is no longer alive. She said that there is a chance (and she had some terrible images in her head that she didn’t want me to have) that there will not necessarily be a whole body that comes out at birth because of the disintegration that takes place after death and during delivery. She suggested that we prepare for birth and the grieving process in such a way that was not dependent on being able to hold or see the baby as these images may not be what we want to remember our child for. There would be grief related to seeing the baby and grief related to not seeing the child, and we needed to ask God for guidance as there were no clear cut answers. We were encouraged to journal, taking pictures of us during the pregnancy and collect those of her in the womb and in so doing make memories which did not rely on that moment after birth in case the circumstances were such that it would be best to not see the baby. She was very encouraging, however, about the fact that we are battling for the dignity of our child to the glory of God.

So I set about the task of creating memories in the pregnancy stage in case we were not able to do this after the birth. Often before a scan, never being sure whether Sarah-Hope’s heart would still be beating, we would do something special with her. Rich was hilarious in this. For instance, we’d walk up the mountain and he would put his hands on my tummy and talk to his daughter about the stunning city we live in, turning me around as if she could see the sights through my belly button!

We specifically asked for pictures and dvd’s of our future scans (we realised this had not even been offered to us because of the abnormalities!), we amused the sonographer as we asked to hear Sarah-Hope’s heart beat again and again so Rich could record it for his phone’s ring tone, Rich ran the Table Mountain Challenge for Sarah-Hope with her name written on his arms and legs, and we organised a pregnancy photo shoot. I also asked my mother if she would make a blanket especially for Sarah Hope’s birth – something that I could wrap her in once she was born. This is the blanket she made:

We were so enjoying her life inside me and being deliberate about celebrating and capturing it. At the same time, we were able to appreciate that we would need to make flexible plans regarding the birth and what we might do after this in terms of memory making. We did not need to have additional disappointments around her birth if things didn’t work out the way we imagined.

Practically dealing with ‘not hoping in outcomes’

As a natural forward planner, it was tempting to look at all the various outcomes and start planning for each of them as a way of coping with the ‘out of control’ future. Fortunately, for the first time in my life I did not have enough emotional energy to do this. We had to be really disciplined about staying present in each stage we were in, and embracing this to the full. We would trust God for the grace, insight and wisdom to deal with each stage as we got to it.

Understandably, our families were concerned about how we would cope if we had a child with significant difficulties – so were we! But again, we couldn’t go there until it was actually upon us. We needed to stay present and enjoy the life we’d been entrusted with each day… after all, this was a real life changing experience and we would probably be quite different people by the time we needed to deal with half the things that we could be worried about.

One of the things I had been nervous about was when I’d start looking obviously pregnant. If strangers asked me if I was expecting, I wouldn’t know what to say or how I would handle this emotionally. The turnaround came when I decided to go to a pilates class that a pregnant friend recommended. I had been feeling emotional and didn’t want to tell the instructor that I was pregnant. What if I wanted to come back in a few weeks and I was no longer pregnant - how would I explain that? So I proceeded with the class, and landed up lying on my stomach and rolling on my baby and doing many things that felt totally wrong! After that I think that Sarah Hope decided that if I wasn’t going to tell people she was there, then she would… because I really began to show! But God poured out His grace on me. My mother spoilt me to a couple of designer pregnancy items which meant I could get out of Rich’s baggy t-shirts. I embraced my pregnancy, without shame, and appreciated the joy and privilege of carrying a child.

Dealing with fears

As the weeks went by, we wrestled with what was going on. Right after the 13 week scan we recognised a battle with fear. This ranged from tangible experiences like having terrible dreams and nightmares to an underlying concern about what the days, weeks, months and years ahead could hold. Fears included:

- having a second miscarriage, not only the physical and emotional process but the loss of innocence related to future pregnancies given that we were aware of the serious abnormalities in this one

- continuing with the pregnancy only to experience maternal health complications which could result in termination anyway

- grief

- giving birth to a dead baby

- giving birth to a live baby whose medical needs would be beyond our ability to care or provide for

- the suffering personally and for our daughter if she survived

- what the implications would be financially

- what this would mean for us socially and relationally

Recognising this battle with fear was the first step. We confessed this to our pastor who encouraged us to “keeping standing” in this storm we found ourselves in. Continuing with this pregnancy felt like a real spiritual battle.

We went away for a weekend up the West Coast to celebrate Rich’s job. We wanted to rest, worship and thank God, remember his goodness to us in our marriage and in our lives and come back refreshed and ready to get our lives in order before Rich started working. After dinner with friends on the Friday night, we drove up to Paternoster. We prayed powerfully as we drove asking God to be at work in and through us. As we were praying, we nearly drove into a cow on the road. Rich had to swerve to miss it but the car moved seamlessly and stayed on the road. We were stunned, freshly aware that we could have lost our lives if it were not for God’s hand of protection. And it spurred us on to pray more!

We had a glorious day in Paternoster and enjoyed exploring the beauty of Saldana, Langebaan and the West Coast National Park on our way back to Cape Town. We prayed as we drove back and really felt God speak to us about fearing him, and not fearing outcomes. This also meant putting our hope in God and not in outcomes. This revelation completely revitalised us. It was awesome, suddenly our liberty to pray and to ask God for healing increased, as well as our boldness and confidence in his goodness.

The 19 and 20 week scans – it looks like it’s over

We knew that the 19 week scan, if we got there, may be able to shed some more light. With the baby being bigger now, there would be an opportunity to see the baby’s organs and how things had developed. With the help of a doctor friend, we had prepared a number of questions for the sonographer for this scan. Based on what they were able to see in the scan, what was the prognosis? If the baby made it that far, what types of support might be required at birth? We had seen our gynae at 15 weeks and the hydrops was getting worse so we weren’t even sure that her heart would still be beating.

When the scan began the baby’s heart was barely beating and the hydrops was significantly worse. The swelling behind the neck had increased from 12mm at the 13 week scan to 35mm now. The lungs were tiny with fluid in the lung cavity which raised the question as to whether there would actually be space for them to develop in the coming weeks, the hole in the heart was still visible as was fluid, the abdomen was severely swollen…

The sonographer was softly saying “shame, baby”, and putting her hand on my leg she said, “I think the best thing to do is for you to take pills. Then we can get the foetus tested and find out what was wrong. You’ll come back here with another baby and we’ll all be thrilled for you”. That was the sonographer’s conclusion of the matter. But we had so many questions! What if she continued to live? How are the kidneys? The liver? She turned back to her machine and said “ok, well let’s look at that for completeness sake…”, but when we pressed her for more information she said “this baby will not survive”. By this stage our baby’s heart beat had suddenly roared back into life and was beating at 140 beats a minute. We asked again about the lungs and the heart trying to understand what was going on, but it was difficult to engage with her. She insisted that the pregnancy be terminated which made it very difficult to talk about it continuing. She said she was surprised we had even come to the scan, as if it was a foregone conclusion that based on the previous bad scan report we should have terminated. We left the appointment totally dejected.

The next day I got a call out of the blue from an old work colleague who I used to pray with but didn’t actually know I was pregnant. She said “Leigh, I had a dream about you last night. You were standing outside a building… I’m not sure if it was a crèche or what but there were all these children inside. These men arrived with AK47s and started killing all the children. When I saw you there, I was shocked.” The dream helped make sense of our experience the day before which had felt so dark, oppressive and heavy. As if there were spiritual forces determined to take the life of our child. Recognising this made it easier to come to terms with how difficult the appointment had been.

The day after we met with the geneticist. She confirmed that based on the scan report, it was likely that we could expect the pregnancy to come to an end whether we intervened or not. She was not, however, prescriptive about what course of action we should take, thereby allowing us the opportunity to proceed with what we felt most comfortable with. She advised that “reducing trauma” is best done by working out what you feel most comfortable with and following that. She did address the issue of testing, saying that this was a relevant concern of the sonographer’s. An ‘aborted foetus’ would be easier to test - however, given that the baby was so hydropic, there was no guarantee that testing would be successful. She proposed the idea of having an amnio so that we had DNA material for testing in the future should we require it. It was also easier to ask her questions such as “what might happen if the baby held on?” She said that even if the pregnancy did continue, the baby would not make it. She described the kind of interventions that might be considered at birth but said that trying to drain the fluid from the baby is very painful so she would be more likely to choose supportive care measures.

We sent a message to friends and family by sms saying that “the baby is increasingly hydropic, lungs very underdeveloped with little chance of growing, heart beating variably… unlikely to make 6 months. Please pray for peace and protection as we aim to enjoy our last time with her… her name is Sarah Hope, and she is very precious to us.” Through research on grief, we had learnt that naming your child, even if they are not born, is a great way to acknowledge their life and place in your family. You have someone to talk about in the future. We named her Sarah, because a special friend had flown out from KZN to spend a day with me shortly after the 13 week scan – whenever she prayed for her, the name Sarah came to her so she started naming the baby in the womb ‘Sarah’. Hope was chosen because of the scripture in Romans 5, which we held onto.

The geneticist arranged for me to go to another sonographer for the amniocentesis. I was relieved – I certainly didn’t feel like returning to the one who had insisted on me having an abortion. The geneticist wrote to the sonographer and explained that we didn’t feel comfortable with termination so she knew where we stood from the start which was helpful. Although this was only 4 days later, it was a totally different experience. This sonographer, while running her own private practice, still ran a clinic in the public sector and was hugely experienced. As a result, she had been exposed to many unusual cases. We got the feeling that the private clinics, with their extremely high termination rate on news of abnormalities, do not get as much experience with unusual cases and actually lose their expertise in this area. The sonographer was so thorough in her scan which provided a lot of information that was very helpful without prescribing what the next step should be. She told me a number of things that no-one had been able to tell me until that point:

-          Since I had gone this far, she reckoned I would not miscarry but would go into labour

-          She had seen babies as hydropic hold on up til 34 weeks or so – so I didn’t need to assume that I would lose the baby in the next few days or weeks

-          Given the increasing fluid build-up, the pregnancy was likely to go in one of two directions: either the pressure of the fluid would cause the baby’s heart to stop or the pressure would start driving up my blood pressure and causing mirror syndrome, amongst others.

One afternoon I was praying for Richard while he was at a job interview. Just getting the interview was a bit of a long shot but a great opportunity so we knew only God could open the door for him. I prayed unlike I had prayed in years. As I was praying I opened up the book of Isaiah and the Lord spoke to me clearly from scripture  and encouraged me that we were ‘doing the right thing’, that ‘the true fast is not turning away from your flesh and blood’, and not to shed ‘innocent blood’. When Rich got home after the interview we prayed together in a way we hadn’t prayed in ages - we were so aware of our dependence on God, our worship of Him was so sweet, we were so humbled by His goodness to us. It was really beautiful. And Rich got the job! We were so encouraged.