Down's syndrome: Mother says she wouldn't change a thing

A mother who broke down after her son was born with Down's syndrome wants other parents of babies born with the condition to know things will be "more than okay".

Kassie Carlyle knew "instantly" that baby Carlson had the condition when he was born in November 2017.

She said it left her feeling like she "had been punched straight in the gut".

Now she wants to reassure other parents struggling with the same diagnosis that support is available.

The mother-of-three, 42, from St Anne's in Bristol, still remembers how distraught she was when she saw Carlson for the first time after giving birth at Southmead Hospital.

"I went into shock straight away and I handed him to my husband and mum. I just couldn’t hold him," she said.

"My husband didn't notice he was any different. The pride on his face made me feel so guilty."

She remembers feeling "floored" and asking everyone to go home.

She did not tell her husband Chris her concerns because she was afraid to "take away that happiness I saw in his face".

She said she will "always be jealous he left the hospital a proud dad full of joy… for me it was was an upsetting moment and I didn’t want to talk to anyone".

During their first night in the hospital, Mrs Carlyle "cried all night" while cuddling her newborn.

"I held him against my chest to keep him warm as his temperature was too low and he wasn’t well."

She asked for Carlson to be checked the next day and a test later confirmed he had Down's syndrome. The possibility of him having the condition had not been considered as she had not been flagged for pre-natal testing.

Mr Carlyle, 49, cried when she told him but said he thought they were "lucky, because we get to take our baby home".

He was worried about Carlson being "an easy target for the evil in this world, but otherwise he’s his son and no different in his eyes".

Mrs Carlyle said her family was very supportive and her mother was her "rock".

"She told me that Carlson would be a blessing to our family and that I would see in time he was exactly who he was meant to be."

'Overwhelmed with fear'

Following the diagnosis, Mrs Carlyle was given "old-fashioned looking leaflets and told lots of things my tiny baby wouldn’t be able to do or what he would struggle with.

"I didn’t feel prepared at all, I felt overwhelmed with fear."

With no positive advice on having a child with Down's syndrome, she spent the first days feeling "broken" and was assigned a mental health nurse.

"I will always feel the guilt of feeling they were among the worst days of my life.

"I knew I loved my little boy but I was so fearful for his future.

"It was hard to tell everyone because I expected the negative reaction but… my family and friends all came to the hospital and rallied around to show their love and support. They love him so much."

When Carlson’s siblings met him they instantly loved their baby brother, she said.

"When I told my daughter Chennae, who was 10, she named him 'our little rainbow of uniqueness' and their bond is so tight.

"My other son, Clayton, doesn’t understand what Down's syndrome is and says Carlson is his best friend and the reason why he's happy every day."

Mrs Carlyle recognises the struggle of new parents in lockdown, particularly those who receive a shock diagnosis, and said of her time in hospital: "I simply would not have survived without my family [being able to visit me].

"They picked me up when I was broken and loved my little boy when I was unable."

Drawing on her own challenges in the early days, Mrs Carlyle knows the value of positive advice rather than just being given restrictions.

"I just want a more realistic and balanced view into the life of living with a child with Down's syndrome."

"Seeing into the real lives of other families is what helped me see that it wasn’t doom and gloom at all, in fact far from it.

"Meeting other mums who knew how I felt and didn’t judge me for those feelings really helped, because unless you've been in this situation I don’t think you can understand how it hits you."

Because of the restrictions during lockdown, Mrs Carlyle wants other families to know there is a lot of online support for new parents when they are ready to reach out.

"It took me quite a few months but I wish I hadn’t wasted those precious early days in a state of worry and depression because if I could rewind the clock I would do it so differently.

"There is an amazing community ready to welcome you and support your journey and they become like family."

Celebrate your baby

She advises other parents: "Don't be hard on yourself for any of the feelings you may have as it’s only natural to worry.

"For new mums dealing with a shock diagnosis, the first thing I would say is 'congratulations… take your baby home, love them... take each day as it comes and stay in the present.

"Celebrate your beautiful baby, put those cards up and get ready for your life to be made extra special!

"Carlson has taught me that the extra chromosome doesn’t define him or anyone else, it is an added extra that makes him extra special."

'Wouldn't change a thing'

Three-year-old Carlson is now in mainstream nursery, has lots of friends and loves learning.

He models with Zebedee talent agency - which represents children with disabilities - and has recently been announced as an ambassador for the ‘Wouldn’t Change a Thing Charity’ which tackles "negative, outdated perceptions of Down's syndrome".

The charity has made a book for new parents or those who are given a pre-natal diagnosis of Down's syndrome.

Carlson and his siblings feature in that book and Mrs Carlyle said: "It would have been lovely to receive such a beautiful book instead of the literature I was given."

She added: “We place no limits on Carlson… he keeps making us all proud by smashing life, proving that he is capable of anything… and breaking down stereotypes and negative perceptions people have about Down's syndrome and disabilities in general.

"He was the missing piece to complete our puzzle. We really wouldn’t change a thing. He is my perfect son."

Approximately 750 babies are born with Down's syndrome each year in the UK.

The Down's Syndrome Association offers support and advice for new parents on its website.

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