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.
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