‘Are you sitting down?’ I was carrying a little one incompatible with life. I’ve prayed like I’ve never prayed.’: Mom grieves loss of 2 newborns to rare chromosome condition

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“They say having a child die is one of the hardest things in the world. So, what if it happens twice over?

Thirteen years ago, I remember standing at the funeral of a friend’s baby, stillborn at full term. I was completely inconsolable, bawling, unable to pull myself together. And much to my husband’s dismay, I just wouldn’t let him console me. All I could say to him was, ‘I just don’t want to ever have to do this!’ Yet I knew in my heart it was very likely I’d be doing the exact same thing at some point in my life. And in the end, I had to do it twice.

You see, I have always known I have a chromosome translocation, a balanced one. My parents had a stillborn baby — with no warning signs, at 36 weeks. And after that, they had tests done to see if there was any reasoning behind it. They discovered, then, that my dad randomly had a balanced translocation of chromosomes 5 and 7, and so did I.

Courtesy of Kelly Christie

This particular translocation has no implications in normal life, but when it comes to having children, there are major issues. Basically there are four options with every pregnancy, all at around 25% odds…

1. A healthy non-carrier of the translocation (a completely normal baby)

2. A healthy carrier of the translocation (just like me)

3. A miscarriage

4. A baby ‘incompatible with life’ (these babies carry an unbalanced translocation – they’re usually stillborn more than 98% of the time, though have a tiny chance of living, but not for long)

So, when it came to having children, we’ve always known there was lots of risk attached. But to us, it was worth the risk. What this meant was walking into every pregnancy with our eyes wide open and our hearts guarded, in case the worst-case scenario turned out to be our reality.

We fell pregnant very easily and tentatively stepped toward the idea of parenthood. But at 12 weeks, I miscarried. We fell pregnant again, and I miscarried again at 7 weeks. Then again at 12 weeks. With three miscarriages in a year, understandably, we were holding our emotions about pregnancy at arms-length by now. Because when you’ve been hurt — and hurt again — you get wary, and a lack of emotional investment became the default way to protect myself. This sucks a whole lot of the excitement and joy out of what should be one of the most joyful times of life.

We fell pregnant again and anxiously waited for an answer on whether this baby was healthy. With every pregnancy, we have had a Chorionic Villus Sampling (CVS) at 11 weeks to determine whether baby has the unbalanced translocation or not. At 15 weeks, we got results that the pregnancy was healthy, and 6 months later, we had a baby girl.

Courtesy of Kelly Christie

Knowing it could take a long time to have a second child, we got onto it pretty quickly — and miraculously, without any issues, we had a second healthy baby.

Courtesy of Kelly Christie

My husband, Russell, was content with two healthy kids — and happy we’d never had to go down the route of making decisions around a baby ‘incompatible with life,’ but I really longed for another child. In terms of risk, cost, lifestyle change, work, and all other manner of reasons, the odds stacked well in my husband’s favor! All I had in my favor was the desire to have another child — my family just didn’t feel complete. And so, after several years of wrestling with the idea, and trying to work through it, Russell agreed to try again.

Courtesy of Kelly Christie

We fell pregnant and waited (with knots in our stomach) for that 15-week mark to find out whether the baby was healthy or not. The call from my midwife came. She asked who was with me and whether I was sitting down — a telling sign, really. She told me the news — I was carrying a little one incompatible with life, a baby who was unlikely to even make it into the real world alive, let alone be with us for any amount of time. There are less than 25 documented cases of this chromosome condition worldwide, and only two where the baby lived. After longing for this child for such a long time, it was rather crushing news.

While the odds of this little girl living were near impossible, we had hope. And in situations like this, hope is what you cling to. There were two cases of children with this condition living — one for two years, though with many complications. Because of the lack of chromosome material, these children have major issues with their brain, heart, and lungs, as well as a bunch of other conditions. There is generally just not enough genetic material for them to live, let alone function.

Because we knew this was a possibility, we had already talked about what we’d do. The common thinking is to terminate a pregnancy like this because the science is very clear — these babies just cannot live or live long. But, as we’d always thought, we decided to carry this baby to term. Making that decision though, in the light of day, is rather sobering. So many unknowns ahead. So much time. So much sacrifice. But, we believed how her life played out was up to God.

We walked that road and clung to the hope of meeting our little girl alive. We had moments where we absolutely thought we had lost her — at 20 weeks, and then again the night before we were due to go in for the Caesarean. I prayed like I’ve never prayed before. And as dawn broke, she kicked.

We made our way to the hospital, hesitant but hopeful. We were almost there. Just hold on! And a few hours later, Nina Kelly was born… alive!

Courtesy of Kelly Christie
Courtesy of Kelly Christie
Courtesy of Kelly Christie

We met her in a bubble of euphoria — she cried, opened her eyes, gazed at us, met her brother and sister, cuddled her grandparents and aunty. Then after an hour and forty-seven minutes, Nina lay in our arms and quietly slowed her breathing until she was gone. For a little girl we never thought would live, she was a marvel.

Courtesy of Kelly Christie
Courtesy of Kelly Christie
Courtesy of Kelly Christie
Courtesy of Kelly Christie
Courtesy of Kelly Christie

After being so brokenhearted at the funeral of my friend’s baby thirteen years before, we were now in the very same position, burying a child. Years ago, I was absolutely broken at the thought of it, but faith, time, the challenges of life, and the maturity that comes with them, did soften the blow ever so slightly.

Courtesy of Kelly Christie
Courtesy of Kelly Christie

When you know the child you’re carrying will die, it takes so much away from the joy of pregnancy, but I realized it also allowed me to begin grieving before Nina passed away — I had worked through a lot by writing a blog of my experience, and by taking the time to bring up the questions I had with God — the ‘whys?’ and the ‘what nexts?’

But there was still a lot I couldn’t work through completely, I mean, really, do you ever work through a grief like this completely? You move through it, but I think the pain is always there in some way.

It felt like a pretty sad note to end a family on, to stop there. That feeling of desperately wanting another baby lessened day to day but still remained. After a year, as several friends announced third pregnancies, my husband could see I was really broken by it. He absolutely did not want to risk another pregnancy, but he allowed our conversations to continue. In the end, we decided to try again. That’s a big call when you know the odds, and you’ve lived through the toughest outcome.

A few months later, we fell pregnant and started the waiting game again. Yet this time around, I felt a peace I hadn’t felt before as we waited for results. I knew my worry couldn’t change anything, couldn’t speed up the process — so why be anxious? There were hold-ups with the CVS testing, other possible problems being flagged like Down syndrome, new tests required, and results postponed.

But finally, at 16 weeks, we had our meeting with the specialist and my midwife. In the back of our minds, we knew there was probably something wrong — all the extra testing, having a doctor there, all of it added up to bad news in our minds. But we held on to hope, because without it, what is there? Unfortunately, the news was as we thought. Another baby with unbalanced chromosomes. Another little girl. Another 6 months of carrying a baby knowing she was going to die at some point during that pregnancy or shortly after.

I naively mentioned to my midwife I thought things would be easier this time around. Practically, that was true, but emotionally, far from it. In the first few weeks, it felt very unfair. All the questions… Hadn’t I paid my dues with our previous losses? Why would you allow this to happen again, God? Don’t you divvy up suffering equally? Why are friends who never even asked for another baby falling pregnant with ‘surprises,’ when you’re taking away this very longed-for baby of mine?!

There were practical challenges to work through in this pregnancy, but the biggest challenge was playing the mind game. There was a lot to fathom, process, reconcile, and honestly, just grieve. But, we had done this before, and we would do this again. And in it, we would find joy to cling to.

The months carrying this new daughter of ours were so much harder than the first time around. I was physically in a lot of pain, and emotionally, it felt like an incredibly lonely journey. Not for lack of support, but simply, this was a trial that felt solitary — so few had done this before, chosen to carry two to term and take on all that goes with that. My faith in God honestly sustained me.

At 36 weeks Molly Robyn Georgina was born, like her sister Nina, alive. She breathed, she cried, she was cuddled and loved for all 92 minutes of her life. While last time, meeting Nina alive was euphoria-filled, this time was tainted by a very visceral feeling of having done this all before, and knowing the heartache was just minutes away. I struggled to find moments of joy, the welling feelings of grief were oh-so present. Molly struggled more than Nina and was less responsive, and I could feel death so close. Our time with her I knew was racing away.

Courtesy of Kelly Christie
Courtesy of Kelly Christie

But despite it all, she had lived, breathed, and been loved completely.

Courtesy of Kelly Christie
Courtesy of Kelly Christie

Despite only having moments of life, those two girls were both worth it. They have had such an impact on us as a family — they’ve changed us for the better. And they’ve had a profound impact on many — family, friends, local community, and others going through similar situations around the world.

Courtesy of Kelly Christie

Their loss still hurts. It won’t ever go away, and we will always long for them to be with us. But at the same time, we have come to a peace in walking on with true joy in our lives.

We haven’t gone on to have any more children either. I was strongly advised to stop after Molly, my fourth Caesarean — and also advised to stop because of the risks, once again. Imagine this happening three times in a row? That line in the sand from the doctors was probably a good thing. It made the call for us. This is it — your family has to be complete. And while that really stings in moments, it has to be okay. It’s not the happy ending the world seeks. But it is joyful nonetheless.”

Courtesy of Kelly Christie
Courtesy of Kelly Christie

This story was submitted to Love What Matters by Kelly Christie of Auckland, New Zealand. You can follow her journey on her Instagram and her blog. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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