Zoe’s Story: where life begins and ends

Transcript

SIMON SMART: Finding out you’re pregnant is normally a time of great joy. But, when Helen Thomas was pregnant with her third child in 2007, she was told that her baby had a condition that made her “incompatible with life”. Her and her husband decided to go ahead with the pregnancy anyway, and what happened next is a remarkable story. Helen Thomas came into CPX to talk about her daughter Zoe.

Helen, early in 2007, you’re pregnant with your third child, going for a scan – and you get some terrible news. What was that news?

HELEN THOMAS: We were told that our baby had anencephaly, which I where the top of the skull doesn’t close properly and amniotic fluid gets to the brain. And because amniotic fluid’s acidic, it eats away at the brain, these babies literally have no brain – which means in medical terms, they’re “incompatible with life”. We were told she would die at birth, if not before.

SIMON SMART: This was obviously shocking news – how did you and your husband begin to process that?

HELEN THOMAS: We were devastated … But while we were trying to process it, we were also fighting for our baby’s life, because we were told that we really should be aborting a baby with this condition.

SIMON SMART: And you made a choice to go ahead with the pregnancy – tell me why you made that choice?

HELEN THOMAS: Three reasons. We looked at Psalm 139, where we are told that our days are numbered since before the beginning of time by God, and we felt very much that this baby’s days were numbered just like anybody else’s were and that we weren’t in control of how many days this baby was going to live. Following on from that, we very much felt like we didn’t want to choose the day – we didn’t want to be the people that chose the day she was going to die. And, thirdly, we felt very much that if one of our other children was diagnosed with something and we were told they only had 20 more weeks to live, we wouldn’t say, “right, well let’s end it now because then we don’t have to go through the next 20 weeks”.

SIMON SMART: Tell us about the birth. You were expecting Zoe not to live – it turned out differently.

HELEN THOMAS: So, at one o’clock in the morning on the 21^st of June, 2007, Zoe was born, and she was born alive, and we were delighted to see that she was breathing! Because I felt very much like I’d held her alive for the whole of the pregnancy and I really wanted Marty to do that independently of me, she was given straight to him and we sat and watched her breathe. And that was an amazing thing to see, because we hadn’t anticipated that was going to be the case.

SIMON SMART: And then she keeps on breathing, breathing, breathing – and it goes on and the life extends much beyond what you could have expected.

HELEN THOMAS: Way longer than we expected! The minutes turned to hours, and the hours turned to days, and the days turned to weeks and months and then years. And she lived till she was four.

SIMON SMART: What was her life like, and what was it like for you as a family caring for her?

HELEN THOMAS: She was highly disabled. So, she couldn’t do anything – she was really just here to be cuddled and loved. She couldn’t move, she could only very slightly move her hands and feet. She couldn’t see, she couldn’t hear, she couldn’t cry. She just laid there, really. She slept and she woke, but she couldn’t communicate with us. But we communicated with her as though she was completely normal, and she came with us wherever we went – holidays, sporting matches, birthday parties, she came everywhere with us.

SIMON SMART: Why then would you say this was a worthwhile life? You very much get the sense from you that you feel like it was.

HELEN THOMAS: Well she couldn’t do anything in the world’s eyes that was an achievement. She couldn’t run or talk, dance or sing or do well in an exam. But she was one of us, and she took her place in our family and we loved and adored her. And she taught us that actually, you don’t have to be good at things, you don’t have to achieve things to be able to be loved by someone. And we felt very much like that – we loved her just as we loved our other children, who can do and achieve things.

SIMON SMART: It can’t be easy, but tell us about her final illness.

HELEN THOMAS: She got pneumonia often so we were very used to her getting very, very sick and we knew that her life was in the balance every time she got pneumonia. And we’d said goodbye to her a number of times actually, she had been so sick.

But this one particular time we knew things weren’t great and we took her to the hospital, and we called our girls in to give her a kiss and a cuddle and we said to them, you know, “We’ve done this before, we don’t know whether she will make it, so tell her you love her and give her a kiss”. And they went home, and Marty and I sat with her, and about half an hour before she died her doctor came in and said, “I think we’re there.” And Marty took her in his arms and I held her hands, and we said to her, “It’s OK to go, Zoe…Go home”. And we thanked God for her and we said to God, you know, “We’re ready, you can take her home now” – and at five o’clock that day, she died.

SIMON SMART: And your sense was that this was a kind of mercy for her, at that point?

HELEN THOMAS: Her life in this world was really difficult. She got really, really sick, often, and heaven is by far a better place for her. For us – we wanted her to stay. Her being gone causes us sadness every day. But for her, yes, this world was a really difficult place.

SIMON SMART: As you look back on this experience, how is your life different because of your time with Zoe?

HELEN THOMAS: I think we’ve learnt a great deal. We certainly have learnt to love our children unconditionally – it doesn’t matter what they can do, it doesn’t matter what they achieve.

I think we’ve learnt to trust God with the big things in life. I think it was up to God whether or not she lived when she was born. It was up to God how long she lived in this world, and it was up to God when he was going to take her home – and I think what Zoe’s life has taught us is that actually, God is in control and we’re not in control. As much as I tried through all of Zoe’s life – through the pregnancy and the delivery and her life – to control things, ultimately, when I look back and I talk through the story, I wasn’t in control at all.

SIMON SMART: Well it is your story; it’s Zoe’s story as well. It was so good to hear it; thank you so much for coming and sharing it.

HELEN THOMAS: Thanks for having me.