Idan, my Superbaby

Every parent knows the feeling.

The first time your baby is sick, it’s frightening. Whether it’s a high fever or a stomach virus, their smiles fade, their cries are heart-wrenching, and in the middle of a sleepless night, a small part of you is scared they might not survive.

For my baby nephew, Idan, it was just the common cold. He was eight months old and had a stuffy nose. He is a happy, bubbly, bouncing baby boy living in New York City. It was a nuisance more than anything else.

But two weeks later he ended up in the hospital with pneumonia. PCP, to be exact, a rare form of pneumonia that usually plagues victims of immunodeficiency syndromes like HIV/AIDS, which he didn’t have. He could barely breathe. He was on a ventilator for two weeks in the pediatric ICU.

After running extensive tests to figure out how my otherwise healthy baby nephew could contract such a rare infection, his doctors discovered something far worse.

“It’s every parent’s worst nightmare,” was how his mother described it.

Idan was diagnosed with HyperIgM, an extremely rare and life-threatening primary immune deficiency disorder. In other words, he was born with little to no immune system. Any and every type of germ could kill him. It only affects 2 in 1,000,000 people.

No amount of googling symptoms on the Web could have prepared Amanda and Akiva, my sister-and-brother-in-law, for this. Though it is a genetic disease carried by the mother, no one else in their family has it.

Idan spent three excruciatingly long weeks in the pediatric ICU, lying strapped to a hospital bed, with tubes penetrating every part of his tiny body. Amanda and Akiva were not allowed to touch, or hold, or even kiss, their first born. They had to wear gloves, a mask and a gown just to be in the same room as their own baby. They had no way to comfort him. His doctors had to administer anti-psychotic drugs to keep him calm.

“The light in his eyes went out,” my other brother-in-law told me hauntingly. And that was just to recover from the PCP.

Now, Idan is almost a year old, and Amanda and Akiva are on a mission to save his life. The only known cure is a very risky million-dollar stem cell transplant. It comes with a 10-15% fatality rate.

Miraculously, they have already found a match. But as cases of Hyper IgM are few and far between, they are meeting with doctors around the world to find the best and most experienced. Last week they were in Boston, next week they are flying to Cincinnati and after that to Seattle to meet their transplant teams. In the meantime, Idan has to have costly weekly infusions of immunoglobulin replacement therapy and antibiotics to help prevent him from getting sick. He can only bathe in bottled water. He can only breathe filtered air. He can’t even have a playdate in the park.

Time is not on their side either. Idan’s doctors have advised them to do the transplant as soon as possible, before flu season starts, because contracting that virus would be a death sentence.

And to increase his chances of survival, he has to endure a round of chemotherapy before the stem-cell transplant. This is to destroy all the cells that aren’t functioning properly, and reduce the chance of his body attacking the new stem cells. The common side effects are well known: nausea, vomiting, painful mouth sores, loss of appetite, insomnia.

It puts your own life in perspective.

Idan is only a baby. It can’t be explained to him. He can’t understand. And somehow, his parents have to stay strong.

“It’s terrifying,” Amanda told me. “I fear the worst is still ahead of us. And as a mother, knowing I was a genetic carrier of this horrible disease and that I unknowingly passed it along to my son, it tears me apart.”

But there is hope.

He can make it. There is a cure. He can survive. He can live. To date, patients with Hyper IgM are surviving to their 30th birthday, and who knows what modern medicine will discover by Idan’s 30th birthday.

His own father, Akiva, beat incredible odds. After growing up in Israel and serving in the IDF, Akiva went to the States for university. At age 25, he was diagnosed with an inoperable tumor on his brain stem. He finally found a surgeon willing to operate and after a difficult operation and an entire year of rehab, he leads a normal life. The right side of his face is paralyzed, but he wears his eye patch (to prevent double vision) with pride. And he has the eternal optimism that can only be acquired after cheating death yourself.

My four-year-old loves to brag that his uncle is a real pirate, but to Amanda and Idan, Akiva is a real superhero, a trait he is determined to pass on to his son.

“Idan fills up a room with joy,” Amanda says. “He’s always smiling. It’s almost like he knows that we need to know he’s OK.”

This Saturday, Idan will turn one. There won’t be a big party with friends and family because all visitors are dangerous for him. But thanks to his fundraising website and social media, hundreds of people all over the world will be wishing him well and praying for him to live to see his second birthday, and beyond.

“They really give us strength,” says Amanda. “We feel prepared to go into battle because we know we have an army behind us.”

It pains me to say that I have not yet met my beautiful baby nephew. He lives on the other side of the world. My younger son is only two months older than him, and I remember when Amanda and I were both pregnant, and we all talked about how our boys would be the same age, and would play together, and one day be friends.

I would give anything to see Idan and my son playing together. They look so similar; they love the same toys, the same songs. They would play and laugh, and take each other’s toys, and cry. And he would live, which is really all that any parent wants for their child.

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http://www.youtube.com/watch?feature=player_embedded&v=P2MCc24Agco

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To stay updated on Idan’s fight for a cure or to donate to his million-dollar stem-cell transplant, please go to his YouCaring page or visit his Facebook page.

To watch Idan on the news: