Friday, December 2, 2016

Yaakov's Journey

The Time That God Spoke to Me Through Two Magazines and a Newspaper

In honor of Yaakov's 30th birthday
Shared with his permission

Yaakov was diagnosed at 18 months with neurofibromatosis, a congenital condition that causes a proliferation of benign tumors of the nervous system; benign in the sense that they are not cancerous, but not so benign in the sense that they can still cause great damage to the human body.

When he was 5 years old, a massive tumor was found in his neck that stretched from the base of his brain to his aortic arch. The tumor encircled and constricted his larynx and trachea, and threatened to impinge on numerous organs, not only his brain and heart, but everything in between, i. e., his spine, lungs and thyroid. The ENT staff at Hadassah Hospital told us that it was a miracle that he was alive and breathing.

Yaakov had had noisy breathing for a few years already, but there had never been any indication that he had any trouble breathing. His doctors had, until then, attributed his symptoms to enlarged adenoids, which they were in no rush to remove. We were now told that there was no option other than to perform surgery to remove the tumor and sooner rather than later. The doctors were careful to inform us that the type of tumor that Yaakov had cannot be removed without damaging the nerve on which it forms. They also told us that despite the urgency of the surgery, they needed 6 weeks to prepare for it, both in terms of research and of obtaining the necessary medical equipment, not exactly music to a mother's ears. During those 6 weeks, my nerves were wound up about as tightly as they could get without snapping altogether.

The excision of the tumor took 11 hours and required 8 surgeons. As we were warned might happen, the surgery resulted in damage to a cranial nerve, leading to, among other things, vocal cord paralysis and consequently, reduced voice quality and swallowing issues. For a couple weeks after the surgery, Yaakov had no voice at all, which the doctors had cautioned could be a permanent result of the surgery. Thankfully, by the end of his 6 week hospital stay, Yaakov had regained his voice, albeit a weaker and hoarser version of the one than he had had prior to the surgery. For the next few months, he had to be readmitted to the hospital numerous times with aspiration pneumonia due to the swallowing problems.

I'll never forget an incident that occurred in shul on Rosh Hashana about nine months after the surgery. For a short time during the davening, I was separated from Yaakov by a large pillar that blocked my view of him. At the time, he was sitting on a chair consisting of a hard plastic seat attached to a metal base. Unfortunately, the plastic part separated from the base and fell off of it, leaving Yaakov suspended by his arms and legs from the top of the base in a position from which he was unable to extricate himself. He was crying hysterically, but no sound came out of his mouth at all and neither I nor any one else around noticed his predicament. By the time I realized what was happening, his face was bright red and soaked with tears. For those few minutes, he had been totally helpless.

The surgeons told us that at some point in the future, they wanted to perform a procedure that would strengthen Yaakov's voice and enhance his ability to swallow. It involved the injection of a liquid form of Teflon into the paralyzed vocal cord which would harden and permanently inflate the cord. They said that they were in no rush to do it and actually preferred to wait a couple of years, as they wanted that area of his body to have the time to heal completely and have a nice, long rest.

I was quite happy not to have to think about the future right away, as I, myself, needed time to heal emotionally from the recent events, not to mention from the fact that Yaakov's doctors repeatedly told us that he had a very poor prognosis. They told us that the normal course of the condition is for the tumors to grow back and that if they did, due to their location, the results could be catastrophic.

A year later, Yaakov was doing quite well. His voice was still weak and hoarse, but he had adapted to his new anatomy and was speaking a bit louder and more clearly and swallowing more easily. The days of aspiration pneumonia were behind us. There was no sign of tumor growth and Yaakov was happily back in school.

Despite the doctor's dire prognosis, life had returned more or less to normal and I started thinking about going back to school to complete my studies for a masters degree in biology. Thinking that I would have to get my brain back into science mode after not having been in school for about 15 years, I stopped into a branch of Steimatzky's and bought myself the latest copy of Scientific American.

When I arrived home and opened the periodical, I saw that one of the articles was entitled, “The Human Voice.” In the article, there were a few paragraphs discussing the Teflon injection procedure that Yaakov's doctors proposed to perform on him. The authors stated that that procedure was no longer performed in the US due to its many complications: adverse reactions to the Teflon, errors regarding the amount of Teflon injected, leakage of Teflon into other parts of the body, and the worst part of it was that the procedure was irreversible. They said that clinics had been set up in the US to deal with the complications of the procedure.

The authors recommended a newer, reversible procedure, a silastic implant, in which a hard piece of plastic was fashioned to the correct size and shape for the patient's needs. The plastic was inserted into the vocal cord under local anesthesia and, while still under anesthesia, the patient was asked to speak. If the voice quality was as sought, the plastic was left in and sewed up, and if not, or if any problems ensued, it could be easily removed, modified and re-implanted (or not). Another advantage of the new procedure was that the plastic was inert and did not produce negative reactions in patients.

At Yaakov's next ENT appointment, I, in one of my more brilliant moves, brought the Scientific American article along with me and showed it to the doctor. His response, in a rather imperious tone of voice, was, “This (Teflon injection) is what we do in Israel. If you want to do the other procedure, go right ahead, but you'll have to go to the US for that!”

I decided to put off the decision for a while. I was confused. I had trusted the Israeli ENT surgeons with the original, very complex surgery, so why wouldn't I trust their judgment regarding this much simpler procedure? I had even, in an effort to determine whether we had followed a good course of action in having the initial surgery done in Hadassah and offer us a sense of what would be the best course of possible future actions, taken the written medical summary of Yaakov's surgery and shown it to the medical director of the National Neurofibromatosis Foundation in New York, a world renowned expert on the condition. He had assured me that Yaakov's surgeons had used state-of-the-art techniques and that he could think of no better place to have had the surgery, or any future procedures performed, than Hadassah.

Did it make sense to trust the authors of a journal article, of whom I knew very little, more than the doctors at Hadassah?

When Yaakov was about 11 years old, I decided that it was finally time to come to a decision about how to proceed. Aside from the continual pressure that was being exerted by the ENT surgeons to do the Teflon injection, I had hoped that we would be able to help Yaakov have a stronger voice by the time of his Bar Mitzvah, so that he would be able to read from the Torah and have his voice heard, just as his friends were doing.

Around that time, I was reading a copy of Good Housekeeping magazine and came across an article on “The Best Doctors in the US” that listed top physicians in every conceivable specialty. This was in 1996, right around the time that I was beginning to use the internet, but I wasn't yet able to do a decent internet search. So, at that time, printed material was my major source of information.

I decided to contact an ENT surgeon listed in the magazine as a top throat specialist. In the end, I was led to another highly reputed doctor in that specialty whose practice was located not far from where my parents live in New Jersey, where we visited yearly. I corresponded with that doctor via email and he wrote, “Please!!! Do not consider a Teflon injection for your son! If it were my son, I would not go near it with a 10-foot pole!”

On our next visit to the US, we took Yaakov to see the throat specialist. On the morning of his appointment, I entered my parents' kitchen to have breakfast, and the first thing I saw was a copy of The New York Times sitting on the kitchen table. It was Tuesday, when the special section in the Times is “The Science Section.” Would you care to guess what the subject of the lead article was in the Science Times that day? You guessed it: the human voice. The article reiterated what I had read in Scientific American five years before, with some more detail and more current information. Just in case I had any doubts that I was headed in the right direction...

The ENT surgeon recommended that we wait until Yaakov was 16, when his body would reach its adult size, before having the silastic implant procedure done. The procedure was most successful in adult sized larynges, where there was enough space for a permanently inflated vocal cord and for air to pass through. So, my hopes for the Bar Mitzvah were dashed, but at least we had a direction in which to proceed.

For the venue of the Bar Mitzvah service and Torah reading,we chose the beit midrash at the yeshiva where Yaakov's father then taught, as it had fairly good acoustics and seemed to afford the best opportunity for Yaakov's voice to be heard. However, I hadn't thought of checking out how his voice carried to the women's section, and it turned out that we women were not able to hear a thing.

All the women present that day sat in perfect silence through the inaudible Torah reading, and tears flowed down my cheeks, for Yaakov and his losses, for my own losses, for Yaakov's continued good health, and for the wonderful kindness, respect and sensitivity of my female relative and friends.

When Yaakov reached the age of 16 and the time came to review the possibility of a silastic implant, we were living in Connecticut. Yaakov was still confounding his doctors' prognosis with his good health. We took him to a local ENT surgeon, who, after some testing, regretfully informed us that Yaakov was not a good candidate for a silastic implant, as the original tumor had permanently affected the growth and shape of his larynx and trachea, rendering his anatomy unsuitable for the procedure. If Yaakov's vocal cord were to be expanded, there would be no room left for air to pass through.

So, while the information in the periodicals did not at that time lead to a solution for the problem of Yaakov's reduced voice quality, it did save him from a potentially dangerous procedure, and left me more knowledgeable regarding possible solutions and medical professionals who might aid us in the future.

Oh, I almost forgot. Before we moved to Connecticut and were told that the silastic implant could not be done in Yaakov's case, he had one last checkup with his Jerusalem ENT surgeon. Just as we were about to leave his office, the doctor said, “You know, I just came back from 3 weeks in the US learning how to perform the silastic implant procedure. If you'd like, Yaakov can be my first patient!” I politely declined.

My take on this story is that God speaks to us in any way that we can hear Him, or, that God is to be found wherever you let Him in. I don't read magazines much anymore, so any further messages will have to come from somewhere else.

When I think of Yaakov today, I am reminded of an idea that I once heard from Yaakov's father, Rabbi David Walk: What is the difference between a blessing and a miracle? Let's say that you have a packet of seeds that has a label on it that claims that on average, 97% of the seeds germinate. If you plant them and 100% of the seeds germinate, that is a blessing. If 101% germinate, that is a miracle.

Today, Yaakov is a mature adult, celebrating a milestone birthday, and, contrary to his doctors' endlessly repeated dire prognosis, he continues to do just fine. When I look at the healthy, happy, kind, caring, funny man he has become, I feel an overwhelming sense of gratitude to God and to His medical emissaries who cared for him over the years. The fact that the tumors never grew back, nor did any new ones ever appear is, at the very least, a huge blessing and perhaps even a miracle.

May God grant that it continue for many more years.


  1. Mazel tov to Yaakov on his milestone birthday! God should bless him with a good life. He is a fine man, good natured and well liked in our community. May his journey through life not get anymore complicated. Thank you for sharing his story!

  2. Beautiful column. And I feel blessed to have known him since he was an infant.

  3. Amazingly powerful and emotional story. Thank you.

  4. Thank you for sharing Yaakov's story. Touchingly written.

  5. Amazing story amazing mother. Many more celebrations togther in good health.