Written by Judith Mehl – first-time granny to Gali Ari Rotem

September 10 is Grandparents Day, and as a first-time granny I should be elated. But instead, my family is in deep sorrow…

My husband, Ken, and I were awoken early on July 8th by our son-in-law, Ohad, to announce that we were grandparents. Our daughter, Olivia, had given birth at 29 weeks gestation to a beautiful baby girl, Gali, who was born via an emergency C-section in Tel Aviv. This was extremely traumatic for Olivia as she gave birth surrounded by clinicians speaking in Hebrew – so she could not fully understand everything, as Gali was whisked away to the NICU before Olivia could even hold her.

I immediately flew to Tel Aviv. Gali weighed 3lbs 2oz and was breathing on her own, active and healthy, with clear brain and heart scans. We were optimistic and hopeful that all would be well. Gali in Hebrew means wave, signifying strength and power. Gali was named after my dear father Goldie/Gedaliah, and I was so honored that Olivia and Ohad remembered my dear, devout, gentle father who viewed the world with wonder and awe. Gali’s second name, Ari, which means lion in Hebrew, is from Ohad’s grandfathers, who both survived the Holocaust – Aryeh who fought with the Partisans, and Asher who despite having survived the concentration camps lived to over 100 and was always happy and optimistic. Gali also got her second name, Ari, from my husband Ken’s mom, Annette, who was resilient and a force to be reckoned with. Little did we know that Gali Ari would need all the power she got from her names.

Gali was placed in the NICU and did beautifully – she was healthy, opening her eyes to Olivia and Ohad, and clasping their hands. Tragically, on Gali’s fifth day of life, blood was found in her stools and she required surgery. I landed in Tel Aviv and arrived at the hospital just in time to meet my sweet Gali before she went in for surgery. We waited, terrified. And then we were given Gali’s horrifying diagnosis – necrotizing enterocolitis (NEC), a devastating intestinal disease. We had never heard of NEC and didn’t know Gali was at risk for the disease, even though NEC is the leading cause of death for premature infants in the NICU.

For our family, the following days were a roller coaster of fear and hope. The NICU is hectic, with machines and monitors ringing, and dedicated doctors and nurses keeping tiny incubated babies alive. It is also a place where parents and grandparents, terrified and scared, sometimes spend the only time they have with their babies. Gali’s body started to swell after the surgery, and despite all their efforts, the doctors could not get the swelling to recede. We hoped desperately that this idea or that suggestion would work. Olivia and Ohad waited and watched, showering Gali with love while their little warrior fought like hell to overcome the swelling that overtook her once-perfect body.

I stayed in a hotel near the NICU and visited Gali during the midnight shift, where I would go in after Olivia and Ohad returned to their home to catch some normality. I’d then report on Gali and sometimes send a picture so that Olivia could read it when she woke up to pump milk for Gali.

I would sing to Gali and tell her how much she was loved by her parents, grandparents, family, and friends all over the world, and from all faiths who were praying and lighting Shabbat candles for her, and this little superwoman would always acknowledge me by waving a hand or kicking a foot even though she was all tied up to tubes and fighting the battle of all battles. It broke my heart.

I hardly slept all the time I was in Israel, just long torturous days praying (begging) that we’d somehow find something that worked. I was in Israel for a month, and Ken joined me for the last two weeks.

Devastatingly, Gali succumbed to this awful disease after 25 days on Earth. Our Gali is buried in a special part of the cemetery for infants. Gali Ari and her parents, Olivia and Ohad, were so brave, courageous, and loving. They never, ever gave up. No parent should ever have to bury their child. No grandparent should ever have to watch their child and their grandchild suffer like this.

I am overwhelmed with gratitude to my family and friends who have surrounded our family with kindness and warmth – listening as I pour my heart out and cry endless tears. One source of comfort for our family has been the NEC Society – a charity founded by Jennifer Canvasser and her family who, just like us, lost their child to NEC. In honor of Gali and babies just like her, I am asking all grandparents to join me in supporting the NEC Society. I beg you to please help us save these tiny, beautiful, innocent babies from NEC. In honor of Grandparents Day and Gali Ari, I invite you to donate to the NEC Society so we can advance research and build a world without this devastating disease.