“I thought it was a nightmare”: little Alice was born with 26 fingers and a foot instead of a knee

The little girl has an extremely rare genetic disorder, with only a few documented cases worldwide. UNSPLASH ILLUSTRATION – Hu Chen

Long awaited by her parents, little Alice was born at the end of 2021 with very serious malformations. Suffering from a particularly rare genetic disease, her parents explain that they took legal action.

Her parents confide that they put all the chances on their side for two years. Her mother eventually becomes pregnant. They then approached a gynecological practice in Saint-Quentin in Aisne.

The woman has an ultrasound every month and learns that she is going to be the mother of a little girl. She finally gave birth on December 31, 2021. Parturition was going well until a doctor spoke to the father.

Very few documented cases worldwide

"You knew about it ?" he asked her. A look at his daughter makes him understand that something is wrong: "Seeing our child who is deformed, I say to myself this is not possible", he explains to our colleagues from Aisne Nouvelle.

Their daughter, Alice, was born with 26 fingers instead of 20, without a thumb on her hands, and with a foot instead of a knee. The hospital staff are formal, they have never seen this: "I counted his fingers several times", his father remembers. The staff did not want to alarm the mother and informed her of "some malformations" only: "I thought it was a nightmare, she says. "Yet this is the happiest day of my life".

Seven months later the diagnosis was made: little Alice suffered from Laurin-Sandrow syndrome, an extremely rare genetic disease, with only a few documented cases in the world. So few, that no one knows how many there are on Earth : "Less than twenty cases", according to his father . "We had a better chance of winning the lottery", specifies Alice’s mother.

Recognized as 80% disabled

The baby then had one of his legs amputated and underwent a major hand operation in September 2023. Next May 21, when she won't even be three years old, her other leg will be amputated. In October 2024 it will be the other hand. Since the child does not have a thumb, she uses her hand as pliers to grab objects.

Her parents are struggling to find a suitable daycare and are trying to cope with a difficult daily life, since their daughter is recognized as 80% disabled. They have taken legal action. Their lawyer misunderstands that the obstetrician was able to indicate the sex of the child but did not see that he had 26 fingers, that his left foot was curled up, that the left leg was devoid of a tibia, the foot was at the level of the knee!"< /p>