1
Where it all began
2nd November 2021
There is an arrogance in continued good health, an assumption you’ll always be well (old age permitting some frailty, of course), and two straightforward pregnancies had given me a misplaced confidence that all would continue to be well.
I was a stay-at-home mother of two preschoolers, Martha, who’d just turned four, and Jamie, who was almost two years old, having taught English abroad before getting married. I had taken my previous two pregnancies and births for granted, and although I knew of friends who had experienced complicated pregnancies and even baby loss, I was naive and had thought none of that would ever affect me.
In fact, I felt so assured and relaxed in our third twenty-week scan, I almost asked the sonographer how often she had to tell parents something was wrong. I’m glad I didn’t. Noting she was quietly concentrating, I decided to leave her to it, thinking it was best not to disturb her. We were running behind schedule because the baby had been tightly curled up when we’d first been called, a rather unaccommodating position for a scan. After leaving to eat, drink and move around, we were back, and thankfully the baby was now awake and active.
The twenty-week scan for the vast majority of parents is considered the gender scan, as they can find out if they’re expecting a boy or a girl. Oblivious to all the things that could be seen as ‘abnormal’, they sail in and out of the room, clutching new scan photos and planning the announcement of their baby’s gender on social media.
The twenty-week scan for the medical world is more accurately called the anomaly scan, as its main purpose is to check if the baby is developing correctly and if there are any abnormalities. We’d been so confident in our second pregnancy that my husband, Paul, a GP, hadn’t even attended the scan, instead remaining in the car with our napping baby. This time round, he’d almost not made it again due to work commitments, but he’d managed to wangle a few hours out of the day to join me. I’m extremely grateful he did.
I had no indication until the end of the scan that anything was amiss. As she finished up, the sonographer turned to me and said she had found a few concerning things.
‘The baby’s bowel is showing up as echogenic, which means it looks white on the scan like bone, rather than grey like flesh. This is not uncommon and could mean you had a small bleed in early pregnancy and the baby swallowed some of that blood and that’s what we’re seeing on the scan. Or it could mean something a bit more serious. Also, the baby seems to be small, below the fifth percentile. Again, this might not signify anything, but because your previous two babies were of average size, and taking the echogenic bowel into consideration, it’s best you see a consultant as soon as possible.’
We were stunned. Something could be wrong and nothing could be wrong? We struggled to make sense of it.
‘It’s best not to google anything and wait until you see the consultant. Would Thursday morning work for you? You’ll be offered some blood tests then too, to rule out things like infections and genetic conditions, so you might not have any answers for a few weeks.’
I was grateful we didn’t have a long wait until the next scan and Paul was available that morning without having to rearrange his work day. Of course, there was no question now of him not accompanying me.
The peace and complacency of a straightforward pregnancy was shattered. Uncertainty crept in; worry followed.
‘What if this is nothing?’ I asked Paul on our way home. ‘What if she made a mistake, or these things don’t signify anything?’
He was quiet, digesting the information and scanning his medical knowledge for clues, desirous not to scare me or jump to any conclusions.
It did not help that he then had to return to work for a few more hours, and we were unable to process together any more until late in the evening.
‘Was everything OK?’ my mother asked as I entered the house and relieved her of childcare duties.
‘Uh, actually, they’re slightly concerned the baby is a bit small so they want us to see a consultant on Thursday morning.’
‘Oh, OK. What are they worried about?’ she queried.
‘We don’t know right now; they need to take blood tests to rule things out.’ I fudged a response, not wanting to worry her or give any answers we didn’t have.
My foremost feeling right then was gratitude for my children. They were playing happily together, totally unaware our happy little world had just been shaken. I felt wonder begin to bloom as the details of their healthy bodies became more vivid – their fully formed arms and legs, the intricate system of life inside. The day-to-day difficulties of motherhood dissolved as I realised how fortunate I was to have them.
Still, I found myself haunted by these two extremes for our new tiny baby: something significantly wrong or nothing wrong at all. Which was it to be?
The decision to have a third child had not been clearcut. While I enjoyed and appreciated having my children, I had struggled with pregnancy, birth and breastfeeding.
Morning sickness (a misnomer) was far worse than I’d expected – it affected my every waking moment for three whole months and felt more like food poisoning with constant nausea, aching limbs, headaches and extreme exhaustion. Some days I felt so unwell, I could barely make it from bed to bath and back again. Being in my late thirties, with a body impacted by previous pregnancies, meant I struggled with carrying another growing little human. Pelvic pain made it hard to stand for long, walk far, carry my toddler or push a pram – quite crucial things when you already have little kids! Also, I had never found breastfeeding easy to establish, requiring a substantial amount of time and support.
At this stage, our lives felt settled and manageable as we’d got past the intense baby phase and were in a good routine with preschool and playgroups. Our nights were mostly unbroken and I felt loath to disturb that peace. COVID-19 lockdowns and restrictions were easing, which meant a return to normality – and yet, deep down, I had a nagging feeling our family wasn’t complete. We were missing another little person, but could I go through it all again? I wasn’t sure I could handle feeling so ill in early pregnancy that I struggled to take care of my children. Combine that with the discomfort of late pregnancy chasing around a toddler and preschooler, the nights you wonder if you’ll ever sleep again because they tag-team wake-ups, and the difficulties breastfeeding… I wasn’t sure I had it in me! If I could go through it, however, the benefits would be well worth it: we would have another unique little person to raise, get to know and love.
I knew I had to make this decision quite quickly, or the decision would make itself over time.
It was Easter 2021 while I considered these thoughts, and part of the Easter story came to have significant meaning. Having been raised in a Christian home, I believed in God and decided to follow the teachings of Jesus from a young age. My faith has only grown deeper as an adult, finding the Bible very fresh and relevant to my life and experiencing the closeness of God in the good times and the bad.
In the Easter story, before Jesus is arrested, He goes to a quiet place with His disciples to pray and He wrestles with a decision He has to make. Can He endure the pain, shame and humiliation of execution on a cross, knowing it would pave the way for the salvation of anybody who believes in Him as Lord and Saviour? A brief but hugely intense period of suffering for Him, to achieve redemption for humankind? He would face false accusations, flogging and a slow and agonising death in full public view. It was horrendous to contemplate. What He would achieve, though, would last for eternity, set captives free and change the whole course of history.
While I would not equate my suffering with Jesus’, it gave me a framework in which to make the choice, with a deep sense of peace. Pregnancy, birth and the newborn period might seem like hardship for me, but it would be extremely brief in comparison to the lifetime of a human being. The glory of having another child to see grow up and develop and blossom into their own incredible personality would far outweigh what I anticipated going through.
This would be the first of many times a story in the Bible shaped our response and gave us a framework on which to hang our understanding of what we were going through. One phrase from a verse talking about Jesus, summed it up for me: ‘For the joy that was set before him he endured the cross’ (Hebrews 12:2).
For the joy set before me, could I endure my cross?
Yes. I decided, yes. Little knowing that the shape of our suffering would look vastly different from my expectations: far more intense and with a much greater impact on our families and communities than we could ever have imagined.
2
Waiting
3rd-4th November 2021
What is worse: knowing or not knowing? Knowing something bad is about to happen, or being blissfully unaware? Knowing what you’re dealing with so you can prepare for it, or the uncertainty that allows your brain to supply worst-case scenarios and imbues the darkness with hideous monsters, scarier unseen than seen?
The next morning I’d woken up very early and was unable to get back to sleep – it was the start of night wakings where the brain processes all it can’t during the day because you’re too busy to let it ruminate. I had complied with the sonographer’s instructions to steer clear of Google at this point, sure it would provide more questions than answers, as I clung to the possibility it was all nothing and just an unpleasant scare.
I started to wonder if the baby’s small size was my fault because I’d been trying to watch my weight this pregnancy and not have quite so many pounds to lose after birth. Or was this all due to an infection I’d picked up and passed on? Had I not been careful enough?
I wondered if we might have to wait until the end of the pregnancy before getting answers, if it was something only detectable after birth. That felt like a lifetime away, enduring the strain of pregnancy and with a potentially heartbreaking outcome. Also, would this all result in birth being affected – would it mean an early induction or even a C-section? I’d had quick, natural labours with the other two and had planned for a home birth this time, in case there wasn’t time to get to the hospital.
Were there more complications that hadn’t been picked up yet? More serious ones?
I took a long nap that afternoon while Martha and Jamie were out with my parents, deeply grateful for their help and support so I could rest. In my time alone, I tried to have realistic expectations for the scan the next day. It was unlikely we’d learn anything new until all the blood tests had come back and I knew that could take a while. Deep down, I hoped the consultant would negate all the sonographer had said and come up with a reason why these two concerns could prove to mean nothing at all.
The following day, we sat in the waiting room for an hour before we were seen: an hour to sit with our fears and worries and feel the stress levels rise.
I’d been trying to remain in a place of peace, trusting that God knew exactly what was wrong and we would soon have reassurance, but this waiting was tough. I could no longer avoid the thoughts I’d managed to keep at bay, and the black shape of the unknown in our future taunted me.
Other couples came and went, emerging from the main scan rooms joyous and excited to now be able to share their news.
Another lady sat alone, having arrived before us.
‘Have you checked in with the desk?’ I asked her. ‘You’ve been here longer than us and we’ve sat here for almost an hour!’
‘Oh, I’m here for Dr Richards,’ she replied wearily. ‘She always runs late,’ indicating a door further up the hallway.
‘That’s who we’re seeing too,’ I told her, realising with dismay we’d have to wait for her to be seen first, giving us even more time to sit with our fears.
It felt cruel to be left for so long, with all the questions and uncertainty, unable to distract ourselves. I envisioned this scenario as a circle of Dante’s hell – the unending torment of not knowing what’s to come, for good or ill.
Eventually we were called in, with an apology detailing a previous scan with a set of twins who had a lot of complications.
I lay on the table again, belly out and gel squirted on, waiting for the expert opinion as Dr Richards swept the ultrasound probe over the bump.
The echogenic bowel and small size of the baby were confirmed.
‘What I don’t see,’ she was able to tell us, ‘are any markers for conditions like Down syndrome, which would include abnormalities like a hole in the heart, curled up fingers, a missing nasal bone and so on. That doesn’t mean we can rule it out. We’ll only find out though a blood test or an amniocentesis.’
She showed us white debris floating around in the amniotic fluid surrounding the foetus, which she assumed was what the baby had swallowed, causing the bowel to look white on the screen.
‘The baby does have short “long” bones, that is the bones in the arms and legs, which can be a marker of genetic conditions. Although you both aren’t exactly tall, so it might just indicate petite stature. Now you need to decide whether you want to have the tests and see if we can find out what’s going on, or if you’d prefer not to?’
We knew the doctor had asked this question because we hadn’t taken the combined screening test at twelve weeks, which gives a percentage likelihood of the baby having conditions like Down syndrome by taking a measurement of the fluid at the back of the neck as well as a blood test. My refusal wasn’t due to any strongly felt principles but to an encounter a few years previously. I’d not felt well enough in my second pregnancy to go to the doctor’s surgery solely for that blood test, and had assumed anomalies were usually obvious by the twenty-week scan anyway.
Then when I had gone for the dating scan in that pregnancy, the sonographer noted I’d not got any results from the blood test and I explained I’d cancelled the appointment, feeling too unwell to walk to the surgery pushing a toddler in a pram up the hill to get there. She offered to have the test done in the hospital and I thought, ‘Why not?’ and agreed to have it done right then and there.
I wish I hadn’t.
The screening coordinator who took my blood wasn’t in a great mood and proceeded to ask how many weeks I was. When I told her, I then received an unwelcome lecture about the timing. The coordinator implied I’d left it late to make a decision about terminating the pregnancy if any of the results came back as high risk.
I found it shocking and deeply offensive.
I believe that God grants life and all life is a gift, and so I have never considered termination would be an option for us. I am aware that having a child with complex medical needs can be more challenging than those with non-disabled children can ever imagine. Yet these children and adults are still loved and can teach us so much about life, love and joy.
I didn’t voice any of this, being a non-confrontational type (especially with people I do not care for and never expect to encounter again), and vowed not to take that test the next time.
So now we found ourselves in a situation where the medical staff thought we didn’t want to take tests out of principle and assumed we might opt out of further testing. I tried to explain I hadn’t wanted to know that early as it wouldn’t have made any difference to us continuing the pregnancy.
All of my past experiences and assumptions dissipated as I was faced with the reality of what lay ahead. Declining the amniocentesis because of the small risk of miscarriage, we explained we did want any non-invasive tests to be able to prepare.
‘One of the tests is called the NIPT test, which stands for non-invasive prenatal testing, and it checks for genetic conditions like Down syndrome. Another test is to see if you’re a carrier of cystic fibrosis,’ Dr Richards continued. ‘If you are a carrier, then we’d test Paul as well to see if he is. If you both are, and everything else comes back negative, then we would test the baby at birth – we wouldn’t know for sure until then.’
I had heard of cystic fibrosis but didn’t know anything about it. Might this be the diagnosis that would shape our family’s future and become a daily reality for us?
As we headed home, my thought process at this stage was, ‘OK, a disabled child, we can do this. Paul is medical and I can stay at home to be their carer… I know it’ll be really tough and take a lot of my time, but maybe this is the cross I’m to bear and I’ll love this child.’ I leaned my head back and closed my eyes, holding back the tears that were threatening.
‘The children,’ I wondered. ‘How will this impact them? My time and attention will be split so much more than I imagined.’ The thoughts flooded my mind in quick succession and I felt anxiety rise. I tried to slow my breathing as I fought to reassure myself and focus on being thankful for my medically trained husband, my family support unit and my active church community. I wouldn’t be doing this alone.
I wrote this passage in my diary that night:
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
(Isaiah 43:2)