Precious and James’s son, Raphael, died at 38 weeks due to Trisomy 9, a chromosomal abnormality that can affect many parts of the body. Precious and James talk about Raphael and how they, and their children Keli, Sofofo and Eddie, were supported by Child Bereavement UK in East London after he died.

“When Precious was pregnant with Raphael, we went to the 12-week scan and all seemed OK,” says James. “We had the Triple Test done, which tests for Down’s Syndrome, Edward’s Syndrome and Patau’s Syndrome. We were told we were in the low risk category. However, at the 20-week scan the ultra sonographer had some concerns as she had noticed some anomalies; we feared the worst but hoped for the best.”

“The day we had the 20-week scan we left home feeling very happy,” says Precious. “You just don’t think about that word ‘anomaly’. We just thought this was the scan where you find out if you’re having a boy or a girl. We’d had three children already and everything had been fine. 

“The following day we found ourselves at the fetal medicine unit. They did the scan and we were told it could possibly be a rare condition and they would need to do an amniocentesis. We waited three weeks to get the results, three weeks that didn’t seem to end. Then we were told that Raphael had a chromosomal abnormality called Trisomy 9. They don’t routinely screen for it as it happens very rarely. Our poor baby was afflicted with Complete trisomy 9 which is the rarest and most lethal type of Trisomy 9.

“Raphael was born at 38 weeks, he was just like any baby. As far as I was concerned the anomalies they had talked about were just structures and medical terms because he was just a perfect little boy and he was beautiful”.

 He lived for about ten minutes. It was shocking because there was part of me that didn’t believe what the specialists were saying as towards the end his kicks were stronger, he was more active and he was growing. It was as though he’d braced himself for us. He was peaceful, he wasn’t struggling to breathe, he wasn’t in pain. He just came for cuddles from us and he was gone, just like that!

“He lived for about ten minutes. It was shocking because there was part of me that didn’t believe what they were saying as towards the end his kicks were stronger, he was more active and he was growing. It was as though he’d braced himself for us. He was peaceful, he wasn’t struggling to breathe, he wasn’t in pain. He just came for cuddles and he was gone, just like that! 

“For the family it’s been a rollercoaster ride. It’s been up and down, it’s getting better but we are still finding our way and finding our feet, coming to terms with it. Some days are really good and we’re all very happy, singing and dancing around the kitchen with the children or sitting down to do something fun; sometimes not so much. It’s not been easy, they’ve all seen us cry and feel sad.

Eddie asked after a bit: ‘Why does it look like the baby isn't breathing?’, even though I’d told him he had died.   I realised he didn't really know what death was.

“For the children, especially Eddie who was six when Raphael died, it was sad to learn that their baby brother has died. They all saw Raphael, held him and we all had the privilege of sending time with him. Eddie asked after a bit: ‘Why does it look like the baby isn't breathing?’, even though I’d told him he had died. I realised he didn’t really know what death was. Although he’s still very young, he does now. It’s like they’ve had to grow up overnight”.

“We definitely grieved at different times and in different ways,” says James. “Through the pregnancy I was more realistic so I didn’t rise on a wave of hope and come crashing down. I was obviously hoping though, you hope it’s a misdiagnosis but I was resigned to it.”

“After Raphael died, I looked online for sources of support and found Child Bereavement UK. I called and got a call back the same day”, says Precious.

“We went initially as a family,” says James. “Then Keli went to the Group for Young People and the rest of us went to the Family Group. We also have counselling sessions which have been immensely helpful”.

The Family Group was good for the children. They made friends and it helped them realise that they were not alone.

“It was good for the children,’ says Precious. “They made friends and it helped them realise that they were not alone, that other children have had people they loved who have died. I don’t think anyone in the kids’ schools had lost a sibling, so it was good for them to be with other children who experienced a loss of this kind. The children could play, and while we were talking about our sadness and grief, they would carry on and have fun.

“We light Raphael’s candle every day. We talk about him because I don’t want the children to forget him and I want them to remember they had a brother when they grow up, because he’s one of my kids.They sometimes write letters to him which we keep in his memory box. I still feel angry, if this happens in so many thousand, why us? Why our baby?”

“Sometimes I think that are so many other things that can happen that haven’t happened to us,” says James. “People get hit by a car on the way home or are struck down by disease. What’s annoying is seeing good things happening to bad people. The law of averages meant we were the one in a hundred thousand, unfortunately it was us.”

My advice to other people in our situation is to keep talking. I’d also say don’t judge anyone else’s grief by the way you conduct yours. Whether you’re wailing and saying it’s not fair or hunkering down and not talking about it, there’s not a wrong or a right way. Everyone has their own way of coping and dealing with things

“My advice to other people in our situation is to keep talking. I’d also say don’t judge anyone else’s grief by the way you conduct yours. Whether you’re wailing and saying it’s not fair to the world or hunkering down and not talking about it, there’s not a wrong or a right way. Everyone has their own way of coping and dealing with things. So, don’t judge others, and try to be as understanding as possible. Just because someone isn’t doing it the way you’re doing it, doesn’t mean it’s wrong.”

Seek help, don’t feel like you’re alone. A lot of the time, when a child dies, people tend not to talk about it because they think: ‘Oh it’s a baby and it hasn’t really lived’. But our baby boy did and it’s still a great loss. Talk about it and when the good days come - those days when you think: ‘Oh, today I feel very energetic,’ - go with the flow, be happy. When the sadness comes too, go with it, own your feelings

“Seek help, don’t feel like you’re alone’ says Precious. “A lot of the time, when a child dies, people tend not to talk about it because they think: ‘Oh it’s a baby and it hasn’t really lived’. But it’s still a loss. Talk about it and when the good days come - those days when you think: ‘Oh, today I feel very energetic’ - go with the flow, be happy. When the sadness comes, own your feelings.”

Don’t deny feeling happy when something bad has happened because you shouldn’t have to force yourself to only feel sadness. Maybe you feel guilty for laughing at something or feeling enjoyment in something but you shouldn’t – just go with it.

“Don’t deny feeling happy when something bad has happened because you shouldn’t have to force yourself to only feel sadness,” says James. “Maybe you feel guilty for laughing at something or feeling enjoyment in something but you shouldn’t – just go with it. And the old cliché is true, time does make things better.”

 

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