A new baby is born. Your first. Life becomes hectic. Ovewhelming. Regular routine becomes a thing of the past. They say, it will return but at the moment that seems impossible. Meals are irregular, often interrupted by the screams of that tiny newcomer. Her nights become days and you follow the newly crowned leader of the family, sleeping around her schedule. Life is upside down. So you think until you read Hila’s story.
.For Hila’s parents, Chana and Elior Perez, life became upside down and inside out. “Hila’s story begins on 14 Tamuz 5779, six and a half years ago. We were a young couple when we merited to become parents of our first daughter. Drowning in the shock of grasping that our little girl was born with Down syndrome, we received more news. Just one day after the birth, they discovered that she had a serious heart defect — AV Canal. That is a medical condition in which the valves are connected, without partitions between the ventricles, a very dangerous situation that demands complex surgical correction.
We were still children ourselves. Becoming parents was glorious, exhilarating. But still an adjustment for people who could still remember being teenagers. But this?! This was not in the script. First Downs, then serious cardiac surgery! Our friends felt overwhelmed when the night nurse did not show up. How could we, a couple of kids, handle this! But handle it we must. Life hadn’t given us a choice.
From that moment, we were cast into a maelstrom that continued for seven long, exhausting months.
The primary challenge was to monitor Hila and bring her to a weight that would enable surgery. We went through long, extended hospitalizations. At times, we “lived in the hospital” – literally – for weeks, just in order to see a slight rise in her weight. The heart defect made it hard for her to breathe, eat, and perform the tiniest physical action. At age seven months, with tons of medications and a lot of energy invested in each meal, she had barely reached a weight of six and a half pounds.
It was almost time for the major heart surgery. On Erev Shabbat, at the height of the tension, we got an urgent call to return to Schneider Hospital. We were told that it’s a matter of pikuach nefesh, life and death. Close to Shabbat, we packed everything quickly and raced to the hospital, where they told us they suspect leukemia. It turned out that Down syndrome children have a gene that sometimes resembles leukemia until age three, but Hila’s numbers didn’t look good. We underwent a nerve-racking bone marrow test after Shabbat and were told that we’d have to be under close hemato-oncology observation for the coming years. Years!
In the end, Hila underwent the heart operation. Seven nerve-racking hours, at the end of which the little heart was corrected. But the battle didn’t end there. For two full weeks, she couldn’t be weaned from the breathing tube, and she fought for her life in the ICU. This was the first time we saw her battling like that. B’chasdei Hashem (with G-d’s kindness), we had a miracle, and after weeks of recuperation, we managed to return home – precisely on Purim, with the outbreak of the Corona crisis. (to be continued)
