Simona (30) shares videos about the loss of daughter: ‘My TikTok account has become a place with a lot of recognition’

Five months after the birth of their first daughter, Simona (30) and her husband discover that their daughter has a rare brain defect. She dies five weeks later.

Having just bought a new house, Simona Cesarano and her husband had their first child, a daughter. They enjoyed each other for the first few months and everything seemed to be going well. Until the new parents heard news that no parent wants to hear: their child turned out to be terminally ill and she didn’t have long to live.

Rare predisposition disorder

In the Wilhelmina Children’s Hospital it was discovered that Simona’s daughter had Lissencephaly, in the most severe form. This is a rare congenital predisposition disorder, in which the cerebral cortex is constructed in the wrong way. This already happens during conception and – due to its rarity – unfortunately never came to the fore during Simona’s pregnancy.

Read also: Eline: ‘A dead child is still a child’

In Lissencephaly, no connection is made between the cerebral cortex and the brain, which causes severe epileptic seizures. For example, Simona’s daughter had one every second.

Tough and uncertain period

From that moment on, Simona and her husband – and their family – never left their daughter alone for a moment. “A period that was an extremely difficult and uncertain period, in which our daughter had constant epileptic seizures and was in hospital,” says Simona. There are children who grow older with Lissencephaly, but that does not apply to their daughter. “She passed away five weeks later. Fortunately, even in the hospital, she was able to show her cheerful sides. But that made it very double.”

Exhaust valve

Simona already shares all kinds of videos on TikTok. Because death is part of life, she also made a video about the loss of her daughter. “At one point I thought: why hide what happened? Death is also part of life, no matter how painful it is.” And so she decided to also tell about the loss of her daughter on this platform. She receives many reactions to it and also receives a lot of support. “It’s an outlet. I fell into a black hole when I lost my daughter. Making videos is a way of remembering for me. In addition, my TikTok account has become a place of great recognition. I am not the only one nor the last to lose his or her child. Most are spared this loss, but unfortunately for too many people this unnatural loss is part of life.”

@sccesarano A thank you to you ❤️ #dankjewel #liefde #verdriet #moeder #moedersvantiktok #eerstekeermoeder # Sterrenkindje # Sterrenkind #rouw #Lost #LostvanKind #baby #daughter #mothersoptiktok #motherenaughter #motherdaughterlove #motherdag #loslaten ♬ original sound – simona cesarano

Break taboo

Since then, more videos followed, in which she tells followers about her grieving process. For Simona, making TikTok videos about the loss of her daughter is a form of grieving. “With my videos I really want to say: talk about it. There are more people who have to miss a child. It’s terrible for everyone, but it would be nice if it became more negotiable and the taboo that rests on this could be broken. That is what I hope to achieve.”

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