This is the story of our son
This is the story of our son, Eitan Kommi, and our journey with him. We are Sahar and Sigal Kommi, proud parents of Eitan, who recently joined the Chimes Israel Early Childhood Center in Ashkelon.
We found out during the pregnancy that Eitan had a heart defect (TOP – tetralogy of Fallot, a cyanotic heart defect). Tetralogy of Fallot can reduce oxygen in the blood that flows to the rest of the body. Babies born with tetralogy of Fallot often have a bluish looking skin, because their blood doesn’t carry enough oxygen. They can also develop tet spells, sudden episodes of bluish skin during crying or feeding.
We named him Eitan
The doctors did not think he would survive in the womb and encouraged us to terminate the pregnancy. Before we could make a decision, as if God was making it for us, Eitan was born prematurely at 30 weeks. We named him Eitan, which means “strength” in Hebrew.
Three weeks after birth, being premature and underweight, Eitan developed a life-threatening condition called NAK (necrotizing enterocolitis). This inflammation of the intestines is a illness almost exclusively affecting newborns. Eitan had the worst possible form of this disease—Stage 4. They explained that infants with advanced necrotizing enterocolitis like Eitan, including the full-thickness destruction of the intestinal wall, which leads to perforation and peritonitis, mortality approaches 100%. For the first 24 hours after it was discovered, we didn’t think he had any chance of survival. By the grace of God, Eitan survived.
An entire year under anesthesia
Despite having no intestines after a
complete bowel resection, Eitan managed to grow a new intestine, something that, according to experts in Israel and worldwide, is nothing short of miraculous. He spent nearly an entire year under anesthesia and was on ECMO (a heart-lung machine), but true to his name again, he survived.
Unfortunately, after all the treatments,medications, and struggles his body had been through, Eitan suffered a stroke, which has left noticeable effects today. He also has physical and hearing impairments. For two years, Eitan was fed through a stoma (an opening in the abdomen) TPN (intravenous nutrition to the bloodstream), and a PEG (percutaneous endoscopic gastrostomy) tube directly into the stomach.
Eitan could return to home care
After many challenges, we reached a point where the medical professionals felt Eitan could return to home care. Today, Eitan is living without a stoma, TPN, or PEG tube. He now attends Chimes Israel’s Ashkelon Rehabilitative Early Childhood Center but still has eating challenges.
Just a month and a half ago, Eitan underwent cochlear implant surgery to address his hearing issues. Before the cochlear implant surgery, Eitan showed signs of regression. He stopped eating solid food (which had been ground food) and struggled to function properly. All he could do orally was drink milk from a bottle. However, after almost three months of home rehabilitation, and after three weeks back at the daycare center, Eitan started to show progress. Recently, a member of his therapeutic eating team sent us a video of him eating. No words could truly convey the joy we felt as we saw Eitan eating food orally again.
Angles we met along the way
We want to take this opportunity to thank and praise God Almighty, as well as the angels we’ve met along the way. We are deeply grateful to the entire Chimes Israel organization, and particularly Eitan’s caregiving and therapeutic team for their dedication, listening, inclusion, and all-around support. Thank you for standing by us throughout this entire journey. When it seemed like nothing could be done for Eitan, you did not give up, you fought alongside us.
Today
Today, our strong boy is back. He’s back
with us, back to joy, back to eating, and back to growing strong, just as his name suggests. The road ahead is still long, but with you by our side, we feel safe.
You deserve all the gratitude andrecognition for not giving up on him. We fought together, hour by hour. Thank you for being patient with me and for listening to my fears as a mother. “Thank you” might seem like a simple word, but for us, it is huge. From the bottom of our hearts, thank you.
