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A Fetal Diagnosis: 1 in 1200

I turned up for my second, supposed to be last, ultrasound in my first pregnancy with some apprehension. Here in the UK, it’s often called the “big scan”, done at 20 weeks to look for anomalies in the baby. You don’t normally see your baby again until they’re born unless there’s a problem.

There was a problem.

The sonographer couldn’t find a stomach.

My husband realized this was a problem. I didn’t.

I had been given a leaflet before the scan that said if the baby hadn’t swallowed any amniotic fluid recently then the stomach might not be visible and they will call you back for a repeat scan. So I assumed that was all it was.

We weren’t able to find out the gender in our hospital but we’d seen quite clearly the baby had male anatomy and we had a quick chat about the fact we were having a boy. Then my husband went quiet. I thought he was disappointed and assumed he had wanted a girl. Actually, he had picked up the fact the scan had been abandoned by the technician (I thought they’d just decided they may as well wait until the next scan to check the rest) and that there were other markers that something was amiss. Shorter limbs than the pregnancy dates suggested. Thicker fluid around the neck.

We returned the following week to a room full of the top obstetric staff from the hospital.

I was still oblivious to the tension in the room.

Only after that scan, when the doctor started pulled together all the facts, did the dots join together in my mind and the picture became clear.

Our son was very unwell and probably had Down Syndrome.

We found out a few weeks later he definitely did have Down Syndrome, and with that my uncomplicated first-time pregnancy became high risk. I was scanned weekly and had to be transferred to the regional specialist hospital with a neonatal intensive care unit, where we knew our baby would spend his early weeks.

So what of the mothers who, instead of being excited in their first pregnancy, are facing news that they didn’t expect?

It’s a lonely place to receive a diagnosis during pregnancy. Everyone else was excited about prams, sharing labor stories and discussing their name choices; I felt like an outsider not wanting to talk about it, for fear of upsetting otherwise happy mothers-to-be. Everyone else said things like, “We don’t mind if we have a boy or a girl, so long as the baby is healthy!” We knew our little boy was not healthy but, didn’t really know how to bring that into a conversation without being a complete emotional drain on those around us. Others idly daydreamed about a happy future for their babies and the things their children might achieve; we worried about schooling, lifelong health problems, how our child would get financial support – and all these months before he was even born!

Surround yourself with positive people. You do not need that work colleague to tell you a horror story about your baby’s condition. It’s ok to say, “I don’t want to listen to this. If you don’t have something positive and uplifting, I don’t want to hear it”. You need friends who won’t help you wallow in self-pity. Friends who build you up, affirm your situation and point you to Christ in your uncertainty.

Understand that some people won’t know what to say. It took time to look past the reactions of some people, particularly family – tears, avoiding us, thoughtless comments – but as they got to know our baby these reactions faded into our memories. We remember the reactions and words, but what’s more important is how those people have welcomed Daniel into their lives with love and joy. Most people in your lives will be the same.

Remember God is in control and He is good. We need not fear the future. He gives us a spirit that “can laugh at the days to come” (Proverbs 31: 25). Even when I was admitted to the hospital near the end of the pregnancy due to further complications, we knew God was working in our lives and that this little boy would fill our home with joy. His middle name is Isaac, meaning laughter, as we knew a deep joy that can only come from knowing God in the midst of trials.

My faith was my strength in a way that often only comes out when facing difficulties. It deepened as I learned to lean on God, praying constantly for our little one, lying in the bath every evening listening to worship music and praising Him. It was an intensity of faith I’ve never experienced before. He was with me. He was blessing me with a strength and a joy in the midst of what the world saw as sad and uncertain.

The truth is, pregnancy is a time of waiting for us all, no matter how straightforward the pregnancy is. Nine months of our body changing and the baby growing but no actual baby in our arms. We wait, expectantly. We trust God already knows our little ones and pray for them as they develop. Even if we know the gender and have a name picked out, we don’t know who this baby will be. Noisy, or quiet? Feisty or passive? Confident or a worrier?

I clung to the words in Lamentations 3:25-26:

“The Lord is good to those whose hope is in Him,

to the one who seeks Him; it is good to wait quietly

for the salvation of the Lord.”

Allow yourself to be honest – to tell others how you feel and how your heart aches to know everything will be ok. The waiting is difficult. Meeting your child will be the greatest moment of your life. Before then, take it one day at a time and be kind to yourself.


Nicola Woods lives in Belfast, Northern Ireland with her husband and two boys, aged 2 and 5, with another baby on the way. Her eldest son has Down Syndrome. She is a qualified accountant but for now is a stay-at-home mother and serial coffee drinker. Nicola enjoys playing the piano, reading, and writing lists and blogs atwww.happyisherhome.com is on Facebook and occasionally remembers to use her Instagram.

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