Kitione and Hannah's story

Soon after the scan, we were taken to speak to a specialist consultant who explained that it was his view that our baby had no chance of survival, and that it would be a matter of days or weeks until they passed away. My questions about any possible treatment, intervention, or early delivery if we reached a later stage in the pregnancy were met with flat refusals and barely concealed impatience at my naivety.

The specialist gently advised me to ​“stay off Google,” as it would only serve to give me false hope. He explained that I should attend any other scheduled antenatal appointments and ultimately wait for my baby’s movements to stop, at which point I was to present to the Emergency Obstetrics Unit and the next steps would be explained.

In the days following, well-meaning people encouraged my husband and me to consider travelling for an abortion, and I can understand how this may seem like a sensible option when there is a prognosis of no survival outside the womb and no medical intervention offered. Abortion wasn’t something that we would consider, and I resolved to give my baby all the time they had, in recognition of their life having already begun.

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As the weeks went on, it seemed at first that our baby was defying the prognosis given, and I had regular monitoring scans scheduled. I asked at each appointment if any other treatment might be available and was excited to pass the 24-week point. I knew that if my baby was delivered alive after this point, medical assistance could be provided. I was informed that early induction wasn’t an option, and at each appointment it was made clear that the baby was very poorly and wouldn’t survive delivery. As the weeks went on, I can now also recognise that I had begun living in a sort of denial, quite sure that my baby was defying the odds and could be delivered well.

At 27 weeks, my baby’s movements stopped. I went to the Emergency Obstetrics Unit, where it was confirmed that they had died. I remember looking at the stillness on the ultrasound, just about to break down emotionally as the reality hit me. I will never forget how, in that moment, I felt the heavy and tangible presence of God show up in a way that I haven’t before or since. I looked at my baby on the screen and had total assurance that they weren’t there anymore, but had gone on to heaven, and I felt a renewed strength and assurance that whatever came next, I would be able to face it well.

I returned home to share the news with my husband and make arrangements for our little boy to be looked after before returning to hospital to have labour induced. The care I received from the midwives when I was admitted to the labour ward was wonderful, and the birth experience, although tough and very sad, was as dignified and beautiful as with my other living children.

I delivered a little girl, and just as the thought occurred to me that Hope would be a fitting name, my husband voiced the same thing. We were able to have a funeral at Hope’s graveside, and her body was laid to rest as we were surrounded by family and friends.

We had a follow-up appointment some months later and learned that Hope had Turner’s Syndrome, a non-hereditary genetic condition which had caused her organ failure. We were placed on a waiting list for genetic counselling to inform our future family planning, and at the time of writing this (2025) we have still not received an appointment time. We are very grateful to have gone on to have three children following Hope, and being Hope’s mum has shaped my experience of motherhood in so many positive ways.

I can totally understand how abortion may appear to make sense in this context, but I can say with surety that choosing to end Hope’s life before her time would have only caused more complex grief and difficulties for us all. I would have missed many tender and beautiful moments with her as I carried her in her final weeks, and I would not be able to rest in the knowledge that I did all I could by advocating for her and trusting that the length of her lifetime wasn’t to be determined by me or anyone else.

I can’t help but think often — and more so since the changes to legislation in NI in 2020 — that there should be a better and more robust pathway of care and support for families facing similar diagnoses.