Julie Cresswell, 46, lives in Nottingham with children, Holly, seven, and Theodore, 10 months. She also has Amelia, 19, and James, 17.
I wasn’t really “with” Theodore’s dad and when I discovered I was pregnant, I decided I could cope alone.
And as I watched this little thing kicking inside me at my 12-week scan I was filled with excitement for the future.
Suddenly, the sonographer said she needed a second opinion. There was a problem with my baby’s lungs.
Because I’m over 40, Down’s syndrome was something I’d considered. But I didn’t want them to look for it because it wouldn’t change anything.
The consultant explained my son had fluid on the lungs and could have Down’s syndrome.
He said I should consider abortion but I’d already made a decision to have this baby and no disability would change that.
I had to be scanned every six weeks and termination was often mentioned but I refused.
I tried to be positive and friends were supportive. Amelia followed the Down’s syndrome storyline on EastEnders, which helped her understand the condition. I read a lot and was open with Holly about it. If we saw a disabled child she’d say: “Our baby might be like that.”
At 33 weeks, Theodore was born by caesarean and put in neonatal intensive care.
I was given a picture of him. Then I knew for sure he had Down’s syndrome. He had the symptomatic gap between his toes I’d read about.
He had blood transfusions and so much fluid drained at one point his lungs collapsed and I nearly lost him.
Today, he has bowel problems and gastric reflux so is often sick. At nearly a year he’s only just sitting up. He can’t feed himself but he’s making good progress, though he’ll always be behind.
People often stare and at some baby groups mothers move their children away. There’s a group at the hospital especially for babies with disabilities and I get a lot of support there, and Holly is so helpful.
Some days fear takes over. Being an older mum, I worry what will happen to Theodore if I die. I worry about his education and long-term health, too. But, despite it all, I never regret my decision to have him.
Julie is supported by Contact a Family, which organises events and workshops, and campaigns for the rights of families with disabled children. Freephone 0808 808 3555.
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