Kelly’s Story

I remember standing at the funeral of a friend’s baby, stillborn at full term, ten years ago, completely inconsolable, sobbing, and unable to pull myself together. 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 it was very likely I would have to do that exact same thing at some point in my life.

You see, I have always known I have a balanced chromosome translocation. My parents had a stillborn baby, with no warning signs, at 36 weeks. And after that 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.

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 bub)
2. A healthy carrier of the translocation (just like me and my other children)
3. A miscarriage
4. A baby ‘not compatible with life’ (they 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 is lots of risk attached. But that didn’t put us off having kids—we chose to trust that God is in control of whatever happens. Though it meant I have walked into every pregnancy with my eyes wide open, and my heart guarded, in case the worst case scenario turned out to be an eventuality.

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 seems the default way to protect yourself. It also takes a whole lot of the excitement out of 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 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 had a baby girl.

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.

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—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.

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. I was carrying a little one incompatible with life, a baby who was unlikely to even make it into the real world, let alone be with us for any amount of time. There are less than 20 documented cases of this chromosome condition worldwide, and only two where the baby lived. After longing for this baby for such a long time, it was rather crushing news.

While the odds of this wee 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 raft 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 that how her life panned 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 Cesarean. 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!

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.

After being so brokenhearted at the funeral of my friend’s baby ten years before, we were now in the very same position, burying a child. A decade before I was absolutely broken at the thought of it, but time, the challenges of life, and the maturity that comes with them, softened the blow and made it a lot easier to leave it to God. 

Those of you who’ve walked a similar path before know how up and down the months after can be. While knowing your baby will die takes so much away from the joy of pregnancy, I realized it also allowed me to begin grieving before she 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. I pushed bitterness aside, and pulled into God. 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. Our conversations continued, and we both decided to try again. That’s a big call when you know the odds, and you’ve lived through the 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 Downs 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 that 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.

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?  The verse that sums up this journey for me is this:

“Love never gives up, never loses faith, is always hopeful,
and endures through every circumstance.”
(1 Cor 13:7)

Even with God at my side, endurance is all I can manage sometimes. But I know God, and I know His truth. I know He has a bigger plan. The little I can see right now seems heartbreaking, but it’s such a tiny, tiny part of our eternal life. I know I will see my babies again in heaven, and I know that their little lives have had a purpose —not just for my growth and relationship with God, but in those that see us living fulfilling lives even in suffering. To God be the glory.

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Kelly is a mum to a 7 and 5 year old, hope baby Nina, with another hope baby on the way. She lives in Auckland, New Zealand with her husband, Russell, and she’s a freelance copywriter, but gets most of her thrills creating stuff, singing, and serving at her church.

 

 

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