What I Learned About Courage When I Was Told My Baby Wouldn't Live Past A Year

Edwards' syndrome meant writer Lynn Ferguson's son faced low odds of survival. For a collaboration between HuffPost UK Personal and The Moth, she tells her story of what rejecting a termination taught her about courage.
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I’m Scottish.

A friend of mine is Bosnian, and he married a Serbian, and together they had a child. They had to flee their country, because their child – being of mixed race – was in danger by just being. They called their son Trim, which means ‘courage’.

My friend said he called his son ‘courage’ because he felt that as soon as the child was born, he’d lost all of his own courage, and that anything that he’d fought for in his previous life had gone, and now he’d fight for nothing but the life of that child.

You know, I’ve thought about that a lot since I’ve had my son, about the things that I’ve lost. I thought that maybe I should have called him Dress Sense or Whole Night’s Sleep or The Ability to Watch a Grown-Up Movie the Whole Way Through.”

Then I settled for Peace of Mind.

I was thirty-seven when I first fell pregnant. Well, I didn’t fall pregnant. There wasn’t some instant with a sidewalk and a flip-flop. I did stuff. I got pregnant. I was 37.

The point is, I’d lived a bit, but suddenly, after twenty years of self-imposed hedonism, I found myself unable to smoke or drink alcohol and taking a little sabbatical from pâté, caffeine, and soft cheese.

The discovery wasn’t the kind of romantic one you get in black and white movies. I had been touring France on the back of a motorcycle with my husband when I started to feel a bit unwell.

Now, a word of advice: if you’re feeling sick, don’t do it at 80mph, leather pants on one end, crash helmet on the other, in a country where they eat snails because they can.

We arrive back home, and my husband decides he wants some take-out food. I have this bizarre thing where I want to do a pregnancy test. It’s positive.

So my husband arrives back with his little brown paper bag to be greeted with the immortal phrase “put your curry down, sweetheart, there’s something really big I have to tell you!”

I’ve heard it said that you feel most like a woman when you’re pregnant. It’s complete rubbish. It’s not so. I felt most like a beached whale. It’s a completely bizarre thing, because you suddenly find yourself entirely responsible for this other person. And this other person has only got you, and so even though the two of you are together twenty-four hours a day, it’s not like you can just go to a bar and have a discussion about it.

Before I got pregnant, my greatest fear about getting run down by a car was that I wouldn’t be wearing matching underwear. After I got pregnant, the whole idea of getting run over by a car took on a whole different meaning. Never mind the eating for two, it’s the thinking for two that wears you out, you know?

“Anybody who’s 36 and thinking about becoming a parent, get your skates on. In fact, in the medical profession they define it as “clinical geriatric” – I am not even joking”

There was a lot of difficulty around my pregnancy, because 37 is considered quite an old age to be having your first child, so anybody who’s 36 and thinking about becoming a parent, get your skates on. In fact, in the medical profession they define it as “clinical geriatric”, and I am not even joking.

So almost as soon as everybody agreed that I was in the family way, they decided that I should have an amniocentesis. An amniocentesis is an invasive test where they put a needle through the mother’s belly and into the amniotic fluid, and it can tell you whether the baby has Down syndrome or not. But there’s also a 1% risk that it will cause damage to the foetus or the foetus will miscarry.

Now, I’m totally not against risk; I think it’s a matter of choice, and I like risk, and I am completely and utterly pro-choice.

But there was no way that I figured they were going to do it. It wasn’t the baby’s fault I was 37. That was entirely on me. That was my decision.

So I was like, no. But every appointment it would come up about the amniocentesis, and initially I would deal with it that way you do when you don’t want to have coffee with someone.

When you go, “Oh, damn, the amniocentesis—we will, we’ll do it. I can’t do it this week, though. Maybe next week? Oh, no, my mother’s coming. No, I can’t do that.”

But as they became more insistent about it, I kind of felt like I had to, too.

So I was like, “You know, can this test tell me whether this child will be a jerk? Can your test tell me whether this kid is going to be one of those really screamy ones that annoys the hell out of everybody on airplanes? Can your test tell me whether this small, tiny, growing human being will mature into a fully grown adult who has some horrific affinity with Peruvian pan-flute music? Because I’m worried about Down syndrome, hands up, but I’m pregnant, and I’m worried about a lot of things. So thanks very much and everything, but no.”

Then came the twenty-week scan.

We were told we were having a boy. Woo-hoo! Then the lady scanning the baby said that my son had statistically a very large head. I looked across at my husband for the first time, I swear, noticing his statistically large head. I silently cursed love for being blind.

She told me I was 37. I knew that. Then, scanning the baby’s head, she said there were choroid plexus cysts all down one side of the baby’s brain.

Okay. That wasn’t something I was expecting.

We were told that everything was going to be “fine” in that way where you just know it’s not, and we had to wait for a specialist.

The specialist we went to see told us we were having a boy. We knew that. She told me I was 37. I know. She said the baby had a statistically large head.

Then she said that the choroid plexus cysts were a problem. We’d kind of guessed that.

And then, scanning the baby again, she said that there was a vessel missing on the umbilical cord.

She said we needed to do the test. But because I had waited so long, they didn’t want to do an amnio, they wanted to do something called a cordio, which is pretty much the same brand as an amnio. They insert a big needle into the womb, and they take a little bit of the umbilical cord, and that can tell them what’s going on with the baby. Now, this is an umbilical cord that they have just told me isn’t fully functioning.

“I’d felt my son move inside my body. What did it matter whether he had a disorder or not?”

We didn’t even need a discussion for the decision. I was like, “Okay, the Down syndrome thing, it’s not exactly what we’d planned, and I know it’s going to be difficult, probably – for us and for him and in ways that I don’t even know yet. But actually, personally, I think there are worse things than having Down syndrome, you know?

“I mean, having Down syndrome doesn’t mean you’re a bad person, does it?”

So I said no.

But that’s when they told me that Down syndrome was off the table and what we were talking about now was Edwards, a syndrome that means the baby will likely die, either in the womb or within the first year of life.

We’d had so many scans, and I’d seen my son. I’d seen his heart, seen the inside of his eyes. I’d seen his hands and his feet, and in fact, during one of the scans, he’d held his hand out to the front of my body as if to say, Will you go away? I’m busy. Do not disturb.

I’d felt my son move inside my body. What did it matter whether he had a disorder or not?

And if he was going to die, well, we’re all going to die, right?

So we should meet first.

He was my son, and he needed me. He was depending on me to make the right decision. So I said no.

We had no choice but to change hospitals after they offered me a termination at twenty-five weeks. It became really clear that they wanted to win a battle, and I just wanted to see my boy.

At precisely 35 weeks and five days, my son decided it was time to be born. My husband drove us to the hospital in our car, neither of us talking about what lay ahead.

The conversation was made up of the same four phrases: “Are you okay?”

“Yeah.”

“You do know I love you?”

“Yeah.”

“Whereas before there had been noise and bustle and shouting, suddenly there was silence. It was like the whole world had gone underwater.”

The birth process was the true definition of laborious. My husband waited and gave me water and held my hand, and the midwives were brilliant. They were really patient and reassuring. It would be okay, they said, everything was really early, but it would be okay.

I have no idea how long labour lasted but eventually, after one final push, my son appeared – shot out, in fact, doing a kind of handbrake turn on the table as he did so. He was purple in colour, and my husband cut the cord. But whereas before there had been noise and bustle and shouting, suddenly there was silence.

It was like the whole world had gone underwater.

The door burst open, and people in white coats came in. They bundled my son over onto a metal table, where they hurriedly tried to resuscitate him.

I had failed my son. He was depending on me, and I had failed him, and the whole world was underwater.

Then suddenly he choked, gagged, coughed up something, and started to breathe. The people in the white coats wandered off, and with my husband standing next to me, they handed me my son.

He. Was. Perfect.

“Fine,” they said. “He’s absolutely fine.”

My son looked up at me. He was curious. He was amazing.

I was so, so very tired.

He looked up at me as if to say, Ooh, that was all a bit of a trial. So very sleepy.

“I am so glad you’re here,” I said.

My son is ten-years-old now, and he’s still perfect (some of the time). And, like his father, he still has a statistically large head.

I haven’t seen my Bosnian friend for such a long time, but I often wonder how he’s getting on in his self-imposed exile.

I called my son Fergus. In Irish it means “the right choice,” but it has a different meaning in Scottish. It means “courage,” too.

Lynn Ferguson is a Scottish writer and performer. She lives in Los Angeles with her husband and two sons, Fergus and Lachlan. This story is cross-posted from The Moth’s latest book, Occasional Magic. You can buy the book here.

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