A mum-of-two admits she would cry herself to sleep when her unborn baby was diagnosed with dwarfism… but everything changed when he was born

AS the radiographer peered at the grainy scan of my 34-week-old baby, I knew something was wrong.

His concerned face gave too much away.

When I had my eldest son George in 2010, it all went really smoothly.

Justian and I had always wanted a sibling for him, and I assumed it would be just as uncomplicated when I fell pregnant again in 2013.

However, at my 20-week scan, the midwife told us there might be slight issues with our baby’s kidneys and ordered an extra scan later in the pregnancy as a precaution.

Naively, we’d expected everything to be OK. But it wasn’t.

Instead, at that 34-week scan, we were told our baby’s limbs looked too short and its head too big.

We needed to go straight to King’s College Hospital in London for further tests.

Terrified, on the way to hospital I looked online for what it could mean.

The same word kept popping up: “achondroplasia”, a form of dwarfism.

In that moment, I didn’t want to be pregnant if it meant such a shocking diagnosis.

Justian was upset, but tried to reassure me we would love our baby no matter what.

During our tests at King’s, there was mention of a termination in the case of severe abnormality, but at 34 weeks I couldn’t consider something like that.

Then, finally, it was confirmed: our child had the genetic disorder achondroplasia.

He or she would have shortened bones and probably grow no taller than 4ft 10in. I was so upset I could hardly speak.

Over the next few weeks we began telling friends. It felt like a confession, and some visitors brought flowers as if I had lost the baby. Few knew what to say.

Almost every night we cried ourselves to sleep.

In February 2014 we saw a video by a family in the same position as us. Set to James Blunt’s Bonfire Heart, it explained the condition, with an overriding message that their baby may be short, but that was all – he was beautiful inside and out.

It was a turning point for me, as I realised our baby would be no different.

Freddie was born in March 2014 by C-section due to the size of his head.

As they showed him to me, I didn’t notice his small limbs – all I saw was his beautiful face.

Justian and I fell in love with him, as we had with George.

The first few months were tough.

Freddie wouldn’t feed and was soon readmitted to hospital as his weight dropped to 7lb from 8lb 3oz in just four weeks.

At five months we nearly lost him to a respiratory virus when his lungs collapsed.

That first year, everything focused on Freddie’s health.

Medical appointments due to his dwarfism took over, and he’s had to have two or three operations each year, including grommet surgery.

Throughout it all, Justian has been my rock.

Thankfully, Freddie is becoming stronger, and while he has problems holding large objects he can use his hands.

He’s so full of character – all the staff at the hospital tell him he’s their favourite!

Of course I worry about his future, but it’s our job to make Freddie as confident as he can be.

When he starts preschool I know George will look after him, and I’ll write a letter to other parents explaining his condition.

They need to know he is just like other kids.

He may be small in stature, but our dreams for him are big.

To find out more about achondroplasia, you might be interested in reading about five-time Paralympic gold winner Ellie Simmonds.

BTW

• Achondroplasia is a bone growth disorder that affects 15,000-40,000 births.
• Jeans for Genes day on September 22 raises money for families of children with genetic disorders. Visit for more information.