Danny Darche, Lore’s father who bravely shared Lore’s short life story at a Fondation Merieux event in France, described his daughter’s birth as a “fairytale”.
“She was born healthy and we were so happy. It was a dream come true but it turned abruptly into a nightmare which we will live with for the rest of our lives,” he said.
Lore developed what first appeared to be a common cold just days before she was due to receive a vaccine against pertussis. The symptoms worsened, turning from a cough to a severe and persistent wheeze.
“The doctors told us she had whooping cough. We were totally lost. We thought this was a disease which had disappeared in developed countries – I hadn’t heard about it since my own childhood.”
Danny and his wife hoped the cough would pass with treatment but it did not. Soon Lore was connected to a respirator to help her to breathe. She then had a total blood transfusion and, later, needed a dialysis machine.
Three days before she died, an x-ray offered a glimmer of hope – her health was improving, doctors said. Tragically, just three days later, Lore died from blood poisoning.
“After doctors made a final attempt to renew her blood, they told us there was nothing they could do. She died in our arms.”
In the days and weeks following their daughter’s death, Danny and his family were left with unanswered questions.
“We felt grief and then huge feelings of guilt. How could this have happened? Is there something we should have done?”
Danny scoured the web for information and learned that health authorities in his area had been running whooping cough awareness campaigns and sent letters to doctors recommending vaccination of expectant parents.
The Darche family had been planning to have a baby for three years. They had endured miscarriages and had frequent contact with health professionals. Yet they had never heard of pertussis. They checked with friends and colleagues who said they too had been unaware of the danger of whooping cough until the news came about Lore.
Danny said he is frustrated and saddened that no doctor passed on the information which could have made a vital difference. Likewise, he questioned whether staff in crèches follow recommendations to be vaccinated against childhood illnesses.
Equally frustrating, he said, is the inconsistency among doctors on the vaccination of pregnant women against pertussis – something the Darche family have been advocating for – and the apparent lack of attention given to the disease which took their 83-day-old daughter.
The Darche family now know that during the first weeks of Lore’s life one of them came home with a cough and contaminated other family members, including their new baby. If they had had booster shots, Danny says, things could have been different.
“Since then life goes on of course but every night we go to sleep with the knowledge that we contributed to the death of our own baby. That’s a sentiment I wouldn’t wish on my worst enemy,” says Danny.
He and his wife are now telling their story in the hope of changing attitudes to pertussis vaccination. Their website has attracted close to 10,000 views and the Belgian media has put their story in the spotlight.
One year after the birth of their baby girl, the Darche family continues to deal with their grief and is determined to warn others that pertussis is a real, but preventable, threat.
“May all we’ve been through serve for the future so that everyone learns from it. Such a stupid tragedy must never happen again.”
Visit: Giving Whooping Cough No Chance in English, Dutch and French
Update: Thanks to Danny’s campaign, the health authorities in his region updated their guidance on pertussis vaccine
Read: Parents dedicate pertussis vaccine victory to their daughter