‘At a routine check up on the baby, a few days before our planned C-section, her heart rate kept disappearing. Distressed this was the end, I agreed whole-heartedly to an emergency C-section as our church community prayed fervently over Zoom,’ says Beth Appleby.
‘Your baby is too small to survive,’ the consultant told us bluntly. ‘She will either die in the womb or shortly after birth.’ We were stunned into silence, feeling our whole future shatter and disintegrate in front of us.
The twenty-week scan for our third child had shown up a few concerning abnormalities and so we agreed to further testing. I had bloods taken but we declined an amniocentesis, not wanting to take any risk with this precious baby. We were wholly unprepared for the results to deliver the diagnosis of a life-limiting genetic condition called Edwards’ syndrome.
At another scan, a regional specialist informed us the baby had a cleft palate and a heart condition and we were utterly devastated to call a hospice and discuss the care they offered. Would the baby live long enough to be moved there alive or would we experience a stillbirth and only have time together there after they’d passed? It was an impossible future to face.
READ MORE: I learnt to trust God again after baby loss - and you can too
Knowing the vast majority of families would have chosen to terminate at this point, we fought back and decided we would treasure every day this baby remained alive in my womb, letting God decide when he’d take her to be with him. I prayed with desperation and weeping that he’d let her live, even with all the difficulties and challenges of living with disability, while also releasing her into his hands.
As the time of birth approached, I clung to verses in the Psalms
As the time of birth approached, I clung to verses in the Psalms, while also struggling with the physical strain of a third pregnancy and caring for two preschoolers. It was a tough time and our family and church were a great support.
READ MORE: How Christians can rally around and support someone going through baby loss
At a routine check up on the baby, a few days before our planned C-section, her heart rate kept disappearing. Distressed this was the end, I agreed whole-heartedly to an emergency C-section as our church community prayed fervently over Zoom.
At 7pm, on a wet and cold Friday evening in late February, she emerged: pink, breathing by herself and screaming at the top of her lungs.
At 7pm, on a wet and cold Friday evening in late February, she emerged: pink, breathing by herself and screaming at the top of her lungs. It was immediately clear this was not a sickly baby who was quickly to breathe her last on this earth! The paediatrician told us she could feel no cleft palate and hear no heart murmur. ‘We are not dealing with what we thought we were dealing with,’ she told us.
The baby was tiny, at just under 4lbs and we wept as the realisation sunk in that this wasn’t going to be a swift hello and goodbye.
‘Hope,’ we announced. ‘She’s called Hope!’ It was the only name we could give her.
The first week of her life was spent in hospital, tube fed and being treated for jaundice as we waited for her blood test results. We were astonished to hear there was no trace of a genetic condition detectable!
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A geneticist had a cancellation in a satellite clinic in our local hospital the next day. She looked Hope over and explained to us how genetic mutations happen at conception and can be the full form, with every cell affected, or mosaic, with only some cell lines affected. She continued to explain that it’s possible for only the placenta to have the genetic condition, but not the baby, which is what she thinks happened with Hope. It would explain the results I’d received during pregnancy and her small size, while also removing any possible effect on her in the future.
We had a perfectly healthy, albeit tiny, baby to take home with us and watch grow up. We were overcome and full of praise to God.
As she grew up and I processed the trauma of what we’d been through, I was haunted by the thought we could have terminated, on the hospital’s advice, and she wouldn’t be here now. As I brought this anguish to God, I felt him whisper, ‘That’s why I chose you to be her parents.’
I also knew I had to write her story, Carrying Hope, to share what God had done for us and encourage others in similar circumstances to know termination isn’t the only option.
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