Running. That’s what I remember most. Running down the corridors of the hospital with my son Idan in my arms, running all the way until I reached the car. I ran believing it to be the only way to protect Idan from the germs that lingered in every corner. I ran to escape from the experience I wished so desperately to leave behind. We spent three weeks in that hospital, watching our sweet baby boy battle a life-threatening illness, requiring a ventilator to breathe, and even fully recover, only to find out the battle had just begun.
Idan was born a healthy beautiful boy, and has lit up our lives ever since. His smiles are contagious and his laughter can fill a room. In many ways he is like his father, Akiva, who I met when we were students at Columbia University. Akiva wore an eyepatch over his right eye, and I soon learned that he cheated death. Diagnosed at age 25 with an “inoperable” tumor in his brain stem, he was told he had only a few years to live. He could not accept that as his fate, and sought out every neurosurgeon in the country until he found one willing to operate. He is now a brain tumor survivor, and a real life superhero who has saved many lives by sharing his experience. When we chose Idan’s name, we knew we wanted it to convey the miracle that brought him into our lives, and symbolize how he was always interwoven with our past and inextricably linked to our future. We chose the name Idan, Hebrew for “era,” because what it really means is the passage of time. Time is ubiquitous but elusive, pure, precious, stubborn and unwavering. There could not be a more perfect name for our son.
When Idan was 8 1/2 months old, after recovering from a mild cold, he began breathing very quickly. It was every parent’s worst nightmare. The cold that never quite went away. No fever, no chills, no problems eating, drinking or sleeping – just a quickened breath – and a hidden danger lurking beneath the surface. We went back and forth to the doctor, everyone believing it was a sneaky virus that would take its course and go away. When two weeks passed and Idan began to look fatigued, we took him back to the pediatrician for a second x-ray. This time, we were rushed to the ER, and Idan was taken to the pediatric ICU to be given oxygen. He was hospitalized for several days before we found out the culprit, pneumocystis jiroveci pneumonia (“PCP”), a very rare form of pneumonia – caused by the most common of fungus that lives in nearly all of us. It wreaked havoc on his baby lungs, and he had to be placed on a ventilator for 13 days to help him breathe. The doctors busily ran tests to determine why he developed PCP, a condition that usually affects those without an immune system. But he was our healthy 8 month old boy, right?
We soon discovered his immune system was severely compromised, which we would later find out was due to an extremely rare and life-threatening genetic primary immune deficiency disorder called Hyper IgM, where the immune system is unable to fight against even the most harmless of germs such as the fungus that causes PCP. For 21 days, we stood by his bedside wearing gowns, masks and gloves, unable to hold, kiss, or even touch Idan. Despite all that, and despite tubes invading every inch of his body, Idan courageously found strength to smile, even to laugh. We read to him, sang to him, danced for him, and yet, deep down, we knew that he was the one comforting us the entire time. His smiles and intuitive stares, ones which belonged to a much older adult, not a child, told us he was strong and going to survive the PCP and conquer his immune deficiency.
After three excruciatingly long weeks, Idan’s lungs finally recovered. He regained his strength and was discharged from the hospital. The day he was discharged, we ran through the hospital, Idan in my arms, trying to avoid all germs possible so he wouldn’t get sick, but mostly in disbelief that we’d ever make it out of there.
Idan came home and resumed many of his normal routines, and you would never know he spent weeks in the hospital fighting for his life. Nonetheless, we live in constant fear of another infection. We are treating Idan’s Hyper IgM with weekly infusions of immunoglobulin replacement therapy to fill some of the holes in his immune system, and antibiotics to prevent recurrences of the PCP. The immunoglobulin replacement therapy will protect him from the majority of infections, bacteria and viruses, but cannot protect him against everything. To date, most individuals with Hyper IgM have not survived past their third decade of life, and are often plagued with recurrent infections and high incidence of cancer. When his lungs have fully healed, Idan will need a stem cell transplant, which, though it comes with its own set of risks and challenges, is the only known cure. We are incredibly thankful to have already found a match, but now we need to find a hospital capable of transplanting him. Because his condition only affects 2 in a million people, the doctors who have treated this disease are few and far between. Just like Akiva did eight years ago, our family is again on the hunt for the doctor who is doing it best, and doing it right.
I have since learned that I am a carrier of Hyper IgM. Ironically, my husband and I underwent extensive genetic testing prior to having children, but Hyper IgM is so rare it is never tested for, so we never knew I was a carrier. As a carrier, I do not have any symptoms, but it turns out that there is a 50% chance that my sons will be born with the disease, and a 50% chance that my daughters will be carriers and pass the disease to their sons. In many ways, we feel incredibly fortunate that this is the first instance of Hyper IgM in my family, considering that the many men in our family who apparently had a 50% chance of being born with the disease were born healthy instead.
As a mother, it tears me apart that I unwittingly passing along this horrible disease to my beautiful baby boy. All I can do now is protect and fight for my son to make sure he gets the very best treatment, has a successful transplant so that he can live a long, healthy, and normal life.
My husband, who wears his eyepatch with pride, gives me hope that Idan, too, can be cured. In June, we set up a fundraising page for Idan to assist with medical expenses, and, since then, hundreds of people have lined up to show their support for Idan and to help us through this next battle. We now have an army behind us, and we’re ready to face whatever comes next.
Our story is a story of hope, resilience, and perseverance against all odds. Idan, just like his father, will overcome. After all, he is the son of a superhero.