"She was born with her intestines outside her body": The surgery that saved 4-year-old Hodia
Hodia was born with a severe congenital defect and underwent a series of complex surgeries. Four and a half years later, doctors at the Schneider Children's Medical Center successfully performed a unique reconstruction of her digestive system.
Hodia was only a month old when her parents were asked to say goodbye to her. She was born with a congenital defect and underwent surgery, but immediately afterward, a severe infection developed, leading to multi-system collapse. Doctors estimated her chances of survival were slim. After a long medical journey that included surgeries, prolonged hospitalizations, and connection to an extracorporeal membrane oxygenation (ECMO) machine, four and a half years later, Hodia underwent the first surgery of its kind in Israel at the Schneider Children's Medical Center, during which her digestive system and abdominal wall were reconstructed.
"The first time I saw her, it was a difficult image that doesn't leave my head," her mother tells mako Health. "She was born with her intestines outside her body. They were inside a small bag hanging in the air. It's a trauma I carry to this day."
Hodia was born with gastroschisis, a congenital defect where the intestines are outside the abdominal cavity. For about a month, doctors tried to gradually return the intestines into the abdomen, but at the age of one month, she had to undergo surgery after an obstruction developed. However, after the surgery, a severe infection developed, and her condition deteriorated rapidly.
"They opened her abdomen in the intensive care unit and saw that the entire intestine was already black and necrotic," the mother recalls. "They removed most of it and left only a small piece. They told us there was nothing to do and asked us to say goodbye to her."
"She would scream in pain, and my husband and I lived around her 24/7"
For long months, Hodia's abdomen remained open. She had no skin and no navel. There were holes in the intestine from which secretions constantly came out. "We changed between 50 to 100 dressings a day. Every ten minutes we changed her dressing. She would scream in pain, and my husband and I lived around her 24/7."
Only when she was 11 months old was she discharged home for the first time, but shortly thereafter she was hospitalized again for another surgery to close the abdominal wall. At first, it seemed the surgery was successful, but two days later her condition deteriorated once again.
"They removed her breathing tube, and suddenly the vitals started to drop," the mother says. "Dr. Eitan Neeman (of blessed memory), a senior physician in the intensive care unit at Soroka who fell on October 7, came to her in the middle of a Friday dinner and stayed all night by her bedside. In the morning, they opened her abdomen again, and then they told us that if they didn't connect her to ECMO - she wouldn't survive."
Hodia was transferred to the Schneider Center, where she was connected to an ECMO machine for about a month and a half. During the hospitalization, she also suffered a stroke that left weakness on the left side of her body. "They told us she wouldn't live, but she proved otherwise," the mother says.
Since then, she has been under the follow-up of Dr. Anat Goz from the Gastroenterology Institute and the staff of the Pediatric Surgery Department. Due to her complex condition, it was decided to perform a unique surgery to reconstruct the digestive system and the abdominal wall. Initially, it was planned that the family would fly to the United States, but in the end, thanks to cooperation between Dr. Dragan Krbarovic, director of the surgical department at Schneider, and Prof. Anthony Sandler from Children's National Hospital in Washington, the expert came to Israel to perform the surgery here.
"When they told us he was coming to the country to operate on Hodia, it was the happiest moment of my life," the mother says. "We didn't want to fly with a child in such a condition, we didn't know how long we would have to stay there, and we felt a weight had been lifted off our hearts."
"We fought for every centimeter and every loop of intestine"
Dr. Yael Draznik, a senior surgeon and deputy director of the Pediatric Surgery Department at the Schneider Center, says that this was one of the most complex and emotional surgeries she has participated in. "We knew the child had only a few dozen centimeters of intestine left, and we fought for every centimeter and every loop of intestine that looked alive," she says. "There was a moment when we feared that the blood supply to the loop on which we built the entire reconstruction would not be enough. It was very stressful. Also, the anesthesia in this case was very complex, and the team of anesthesiologists under the management of Dr. Yelena Tseitlin, director of the anesthesia system, did an amazing job."
According to her, after the reconstruction of the digestive system, a complex reconstruction of the abdominal wall was also required using two special meshes. "If we hadn't succeeded, she could have remained dependent on intravenous feeding for the rest of her life."
"The most emotional moment," she says, "came precisely after the surgery. Her mother sent me a message that the system had started working, that there were bowel movements and that she was producing stool as it should be. For us, this was proof that the reconstruction was successful."
Today, Hodia still needs intravenous feeding and is under medical follow-up, but she is already eating by mouth and progressing gradually. "She is stunning," concludes Dr. Draznik. "She still has a way to go, but we hope that slowly she will need less and less intravenous feeding. After everything she has been through, it's fun to see her with a closed abdomen and with a future that can finally be looked at with hope."
