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My child exists: Breaking the silence over infant loss

AFP
AFP - [email protected]
My child exists: Breaking the silence over infant loss
President of Umamanita Stillbirth and Neonatal Death Society, Jillian Cassidy. Photo: Benjamin Bouly Rames/AFP.

Every year, 2.6 million children around the world die in the womb or shortly after birth but parents say their grief is all too often avoided as a taboo subject.

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"You don't get over a child, a child is for life, alive or not," Paloma Costa-Jimenez, 38, told AFP during a memorial ceremony in Madrid ahead of Monday's international pregnancy and infant loss awareness day.

Her daughter Andrea died on February 13, 2014, right at the end of her pregnancy. Since then, she has had two other children.

"If your husband dies, no one will tell you: 'Don't worry, you're young, you'll find another'. So why say that about my child?," she asks.

"For me Andrea is just as real as Inigo and Mateo," her other two children. 

"Since people didn't see her and she was only with me nine months, some people think 'it doesn't count'. But it does, it really does, she's my daughter."

Broken by their loss, parents often struggle to find the necessary support. 

That was the case of Jillian Cassidy, who lost her first daughter Uma in 2007 in her third trimester of pregnancy.

"Outside Spain, there were lots of resources -- information, support, associations, training of health workers. But here, nothing," said the 42-year-old, who is Irish and lives in Spain.

So it was that in 2009, she decided to create Umamanita, Spain's first association to help grieving parents.

Speaking out 

"Death makes us uncomfortable," said Cassidy.

"Given all the joy that a baby brings, when he or she dies, it's even more problematic and taboo." Yet speaking about it is crucial, just like any other grieving process, she added.

"If parents talk about their baby, talk to them about their baby. If the baby has a name and the parents have told you, use the baby's name," she said. 

"Many people are scared of hurting them more if they talk about the baby and actually it's not the case, on the contrary."

Beyond this, spending time with the deceased child to create memories -- however short-lived -- is essential for grieving parents, specialists say.

Pilar Gomez-Ulla, a psychologist and co-founder of an association called "The hollow in my belly" that supports them, has experienced that grief as she herself lost three children.

She has since specialised in supporting people suffering from perinatal grief and advising health workers on the issue.

"It's not just about offering them to see their child," she said. It's about preparing "parents to properly take the decisions they want: see their baby, touch him or her, discover them, get them dressed, give them a bath, invite other important people in the family to come see the baby, meet him or her, kiss them, and take photos."

Everyone is different 

Marie-Jose Soubieux, a Paris-based child and adolescent psychiatrist and psycho-analyst, said it was crucial to let parents choose what they want to do.

"It's very delicate and personal as it's also extremely violent to force someone to see their dead baby," she said.

"But it's important that the parents know what can be done."

Not all parents have been able to make that decision.

Cassidy wanted to see her daughter but "we were advised against it," she recalled.

For her part, Jemmy Cardenas left her husband to recognise their son Paul, alone.

He died during birth and his twin sister Natalia, who has since also passed away, was in intensive care with cerebral palsy.

"I was under anaesthesia and I wasn't able to say: 'I'll go'."

"When we mothers are so bewildered, so lost, all I ask for is a moment," a pause to digest what is going on and "start seeing your harsh reality maybe a little differently," she said.

"Because this is something that will last all our lives, it's transcendental in the life of a mother."

It's only thanks to a photo taken by her husband that Jemmy was able to discover her son.

"It's a photo that I won't ever tire of looking at, I am going to display it with that of his sister," said Paulo Zapata, the father of the twins.

A photo they hope to show their third child, due next year.

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