One in 300,000 cases • Doctors at Shaare Zedek saved the life of a 10-day-old baby who was put to sleep and respirated due to a rare 'cellophane' syndrome
Amar's parents are with Vered Acharek-Cohen, a nurse in charge of the pediatric intensive care unit
Photo:
Spokeswoman for Shaare Zedek
Amar Abu Farha was born in a hospital in East Jerusalem weighing only two kilograms.
At birth, doctors noticed that he was suffering from a dangerous and rare Collodion Baby Syndrome, which causes the skin to develop abnormally, and to develop a cellophane-like membrane, which does not properly protect the baby's body.
After tests and metrics were taken, he was released to his home in good condition.
Ten days later his health began to deteriorate.
Amjad, Amar's father, said: "We noticed that he stopped responding and developed an alarming indifference. His body temperature was only 33 degrees. We realized there was a problem and immediately turned to the gates of justice."
Amar is being treated at Shaare Zedek Medical Center in critical condition.
A quick examination performed by the medical staff in the pediatric intensive care unit at the hospital indicated the presence of a violent bacterium, which had spread throughout his body due to the syndrome from which he suffers, and there was grave concern for his life.
His condition deteriorated and he was resuscitated and put to sleep.
After a strenuous struggle for his life and supportive care, which included medication and respiratory support, his health condition improved and after 12 days of hospitalization he was recently released to his home in good condition.
"This is a rare disease that is diagnosed with an incidence of only 1: 300,000 births. Due to a genetic mutation, there is a disorder in the development of the skin, which among other things exposes the baby to the penetration of dangerous bacteria from the external environment," explains Dr. Amir Zilka. Jupiter.
"Apart from the risk of infections, the lack of normal skin also causes the baby to be at risk of fluid loss and body heat. A relatively small proportion of children with this syndrome recover completely after a few weeks, but most develop chronic skin disease that requires constant treatment."
Thanks to the prompt and professional treatment, Amar was released to his home in good condition.
His father, Amjad, stated: "I thank the staff at Shaare Zedek for not giving up and saving our Amar. Every day that passes, his condition improves and we thank God that we got him back."
