As her son prepares for his GCSEs, a mother tells Marion Sauvebois why Down’s does not define him

AS doctors prodded her newborn, Jenny Williams tried to remain positive. Nothing was wrong with her son. It was just a precaution.

When they turned to her and announced Callum had Down’s syndrome, she felt powerless.

She simply sat motionless on the hospital bed as they launched into an extensive list of all the ills that would befall her child and rob him of any chance at a normal existence.

“The doctor poked and prodded him for about 10 minutes, turned around and said, ‘There’s no other way to say this, but your son has Down’s syndrome’,” said the mother-of-five from Freshbrook.

“I shut down. I didn’t want to listen. I remember sitting on a bed and them saying he wouldn’t be able to do this or do that. It was all about the negatives of Down’s; no reassurances.”

Jenny’s homebirth had gone as smoothly as she could have hoped. After the delivery, one of the midwives took a long look at Callum and made a call to Princess Margaret Hospital.

Basking in the joy of being a mum for the fourth time, Jenny was oblivious. When the midwife suggested they go to hospital to ensure her son was in good health, Jenny and her now ex-husband agreed without a word.

“His birth was really easy,” explained the 45-year-old volunteer for the Gateway Furniture Project. “I started to get contractions at 2pm and he was born at 4.25pm. There were no complications. One of the midwives left when he was born. But the other stayed and when she gave him to me said, ‘Do you notice anything different about him?’ I just thought he had a small head and his tongue was hanging out. All his features were much smaller.

“She said she would call the doctor. I said she could use the phone but she went outside instead. I didn’t think too much about it. She said she would get the doctor to come and check me out. I had never had a homebirth before, so I thought it was normal. But she took another call and said, ‘I think we should call an ambulance and take him to the hospital.’ She was trying to make it sound routine.”

Four people, including a midwife and paediatrician, were waiting.

“When they told us, Callum’s dad broke down. In some ways, he was able to deal with it there and then, whereas I wasn’t. I didn’t cry. I just felt numb. I had lost all control of everything that was happening in my life. I didn’t want to accept it.”

Back home, Jenny became an automaton, going through the motions.

“It was almost an indication of failure: I had produced this child that was not perfect in people’s eyes. I felt guilty and I thought maybe I had done something wrong. I pretended like everything was normal. I had three other children to look after.

“I didn’t feel I could get close to him or bond with him. I spent a week grieving. You grieve for the future you were expecting.”

As the weeks and months went by Jenny’s fear of judgment, or worse, being pitied, only grew and she became increasingly worried about leaving the house with Callum.

But her feeling towards her baby son changed overnight, after her obligatory office visit to introduce her fourth child to her work colleagues.

“He was five months when I brought him in and everybody crowded around him. I was saying all the things I felt I ought to say. That I wanted him to take his GCSEs and get a job.

“And a woman there said to me, ‘Is that really possible?’ I thought, hang on a minute, this is my son you’re talking about. I thought, if I don’t stand for him, who is going to stop these ignorant comments and fight for him? That was a big turning point.”

Jenny contacted a friend, whose son had also been diagnosed with Down’s syndrome, and joined Special Tots, a council-run group.

Despite doctors’ calamitous predictions, Callum thrived. He took his first steps at 20 months – not six years old, as she had been led to believe would be a possibility – and he was potty-trained by the age of three-and-a-half.

Apart from suffering from bronchitis twice in his first year and receiving physiotherapy to strengthen his muscles and regular speech therapy though the Swindon Down’s Syndrome Group, Callum – now aged 15 – could not have had a more ordinary childhood, according to Jenny.

And he never developed any of the serious conditions or heart problems the consultants had feared.

In fact, he attends a mainstream school, Isambard, and is a typically hormonal yet extremely loving youngster.

To ensure she and her family received adequate support, including much-needed speech therapy for Callum, she joined the Swindon branch of the Down’s Syndrome Association, which is now Swindon Down’s Syndrome Group.

Its help has proved invaluable over the years.

“Having Down’s doesn’t define Callum. It doesn’t mean he’s not healthy or normal. People talk about suffering, but Callum is not suffering. The only thing he suffers from is other people’s attitudes.

“People are aware of the condition, but there is a lot of negativity about it. And the ignorance around it is still quite wide. It’s got better, certainly in the last 15 years, but there is a long way to go.

“I wanted him to go to mainstream school. There is a learning delay. But he will be taking his GCSEs.

“Of course, there are practical challenges, but Callum is a high achiever and he knows his own mind.

“We are looking at the possibility of him living independently or semi-independently with support. It’s been an adventure. There are ups and downs, as with any other child. He is a very typical teenager.

“But Callum has opened up a world of opportunities and given us a new outlook on life.”

To join or find out more about Swindon Down’s Syndrome Group go to swindondownsgroup.org.uk, call on 01793 538335 or email info@swindondownsgroup.org.uk.

Down's syndrome fact file:

  • Down’s syndrome is a genetic condition that typically causes some level of learning disability and a characteristic range of physical features.
  • Most babies born with Down’s syndrome are diagnosed after birth and likely to have reduced muscle tone, leading to floppiness, eyes that slant upwards and outwards and a below-average weight and length at birth.
  • Their palms may have only one crease across.  
  • Everyone born with Down’s syndrome will have a degree of learning disability. Each person will vary in ability.
  • The condition is caused by the presence of an extra copy of chromosome 21 in a baby’s cells. It is not known what causes the presence of the extra chromosome.
  • Many children with Down’s syndrome have associated health conditions. Possible complications include heart disorders, infections, bowel abnormalities and hearing and vision impairments.
  • More than 40,000 people in the UK have the condition.
  • Although the chance of a baby having Down’s syndrome is higher for older mothers, more are born to younger women.