“My daughters had never heard me speak,” confides the first larynx transplant patient in France

2023-11-21 08:22:14

Her husband, she said, “forgot the sound” of her voice. And her two “daughters had never heard her speak”. The first patient to have benefited from a larynx transplant in France – the eleventh in the world – Karine, 49, prefers to give her impressions on paper, while maintaining her anonymity. Speaking is still difficult. Two months following the transplant, carried out at the beginning of September by surgeons from the Hospices Civils de Lyon, only a deep, almost metallic sound escapes from his throat.

“The mucosa is well placed but the larynx is not yet moving. The vocal cords are not tense,” explains Philippe Céruse, the instigator of this first transplant. For the moment, Karine finds “her voice abominable”, reveals the specialist. “In the first weeks following the operation, patients always have the impression of going backwards. It’s normal, we can’t talk once more in a few days,” adds Lionel Badet, head of the urology and transplant surgery department at Edouard Herriot hospital.

A very long rehabilitation process

The very long rehabilitation work has barely begun. We will have to wait for “nervous regrowth” to find a hint of sensitivity in the throat within six months. And between twelve and eighteen months for the start of motor skills of the larynx. Which might allow Karine, fed by a tube, to be able to eat once more. For now, the patient is relearning the essentials: inhaling, exhaling.

“One day she told me she smelled something strange. It was simply air passing through her upper respiratory tract, testifies Nathalie Crouzet Victoire, speech therapist who took care of the mother for two months. She had forgotten what it was. It’s difficult but she has faith. »

“Laryngeal innervation is what is most complicated,” notes Philippe Céruse. Today, the medical team is not hiding its face. If the surgical intervention is a feat, the total success of the transplantation is not guaranteed. Far from it, despite hopes. “The price to pay is patience and uncertainty,” confirms Lionel Badet, emphasizing that it takes “a lot of time for the transplant to be functional.” “When you graft, you set up a timer and this timer defines the survival of the graft. No one is able to predict it. It is not excluded that one day the patient will lose her graft. It’s a sword of Damocles hanging over your head. You have to learn to live with it. »

First uterus and penis transplants?

Karine, who had been breathing through a tracheotomy for twenty years following intubation complications following a cardiac arrest in 1996, wanted to “get back to a normal life”. She volunteered ten years ago, knowingly, she specifies in writing: “I knew that it would be necessary to show courage and patience”.

If the HCL has a budget to carry out two other larynx transplants, it will be necessary to wait until this first patient is “doing perfectly well” before starting. In the meantime, the Lyon transplant teams hope to be the first to carry out “next year or within two years”, a uterus transplant for “women affected by permanent and non-reversible sterility” as well as a penis transplant for “penile amputees” men who have had a “terrible experience”. Two non-vital organs which are “synonymous with social death” in the event of dysfunction, concludes Lionel Badet.

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