Towards the end of the seventh month of pregnancy, a tumor (Kasabach-Merritt syndrome), which carries a very high risk of intrauterine death, was detected in the fetus at the maternity hospital in Mulhouse. A mass present in the neck posed a risk of "compress the breath" of the baby, explains Dr. Chris Minella, referring physician at the Multidisciplinary Prenatal Diagnosis Center of the University Hospitals of Strasbourg, on Monday, during a press conference at the Woman-Mother-Child Hospital in Mulhouse (Haut-Rhin).
The swelling was growing very quickly, reaching the entire base of the baby's face. After establishing the diagnosis, the reference center for superficial vascular anomalies at the Hospices Civils de Lyon, a specialist in these rare pathologies, proposed using prenatal treatment with Sirolimus, under the direction of Professor Laurent Guibaud.
"The only way to save this baby"
It was "The only way to save this baby"Professor Guibaud, reached by telephone, explained to AFP that Kasabach-Merritt syndrome is "A very aggressive tumor. Its particularity is that it aspirates platelets, platelets being an important element for clotting. The baby ends up with a very low platelet count and is subject to hemorrhages that can be fatal." according to Professor Guibaud.
Little Issa presented "Signs of distress suggesting that her blood clotting was beginning to malfunction"In agreement with the doctors and the family, it was decided to administer antenatal treatment with Sirolimus, an anti-angiogenic drug (which limits the proliferation of blood vessels). The drug, administered orally to the mother, crosses the placental barrier and reaches the fetus, thus slowing the growth of the tumor.
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"This is an exceptional treatment that saved this little boy."
"This is the first time this treatment has been used prenatally to treat a vascular tumor of this type," Professor Guibaud emphasizes this point. On November 14, 2025, Issa was born by cesarean section at the Hautepierre maternity hospital in Strasbourg. The size of the tumor had decreased, and he did not need to be intubated to breathe. However, his platelet count was quite low, necessitating a platelet transfusion.
"This is an exceptional treatment that has saved this little boy, whose malformation has been stabilized.", says Dr. Alexandra Spiegel-Bouhadid, hematologist in the pediatrics department of GHR Mulhouse Sud-Alsace, who has been following Issa since his birth.
This prenatal therapy, which can treat large, potentially lethal vascular malformations, was unveiled in August by the Reference Center for Superficial Vascular Anomalies (CRMR AVS) of the Hospices Civils de Lyon.
It had already been used to treat other types of malformations but not for the syndrome from which Issa suffers.
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"Despite his tumor, he's a normal child, he eats well, he's growing well."
"Now, the challenge is to optimize this prenatal care so that it can be offered to other vascular lesions of this type." explains Professor Guibaud.
Today, Issa, 3 months old, has a mass on the lower part of his face but is a smiling and alert baby. "Despite his tumor, he's a normal child, he eats well, he's growing well.""I'm so happy," says his mother, Viviane, 34. The infant was able to return home a month after his birth and receives regular follow-up care at the hospital in Mulhouse. He continues his treatment with Sirolimus.
"Having seen him every week, I can tell you he's doing very well. He holds his head up very well, he gives beautiful smiles.", notes Dr. Alexandra Spiegel-Bouhadid. "It was very stressful," testifies the infant's mother, "But we were right to keep hope: he is here."
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