“Mazel Tov, it’s a boy!”

This was my fourth pregnancy. The first three ended in natural, healthy deliveries, so I took it for granted that everything would be fine with this one.

It didn’t occur to me to ask if everything was all right. It wasn’t, because soon after, the director of the neonatology unit told me that he didn’t like the way the baby was breathing.

It seemed like the baby grunted when he breathed, and his color was not the greatest, so the doctor felt more comfortable putting him in the NICU. At that point, I didn’t pay too much attention. “Do whatever you have to with him,” I thought. In any case, I only have healthy babies. Surely everything would turn out to be just fine. There was only one thing that mattered now: I had a baby, and I couldn’t wait for Shabbos to be over to call my family. Boy would they be surprised-- three weeks early, and a c-section also. Who would believe it?

My family was very shocked, indeed, but more than anything else, they wanted to know why the baby was in the NICU. I didn’t really know what to tell them, and I also didn’t know why they were so worried. I told them to relax.

The next morning, I braced myself and went to see my baby downstairs in the NICU. He was on C-pap to help him breathe, the nurses explained. He was also being fed through a tube, a tiny amount at a time. I asked a ton of questions. I wanted to know how long they thought he would need all this stuff and when they thought I could nurse this little boychik. After a few days, they actually let me nurse him, but to my chagrin, he had not the slightest idea how to latch on. It was a struggle. I tried again and again. I cried and he screamed. My mother came to the hospital to try to help me, but to no avail.

Meanwhile, the nurses in the hospital began asking me questions, like, how many older children do you have? Are they all healthy? Are there any aunts or uncles with any medical conditions? I was very puzzled. Why were they questioning me? They told me they were asking because his skin seemed to be very mottled (this was a new word for me). But weren’t all newborns like that? They were also concerned because he was born breech. But I knew many healthy babies who were born breech. Also, his tone was a little floppy (another new term). I couldn’t imagine what they were hinting at.

Something was fishy.

I was beginning to feel that something wasn’t quite right and that things were not in the normal range. I wanted somebody to talk to me directly without hiding any information, so I called the doctor who was on call in the NICU. “What do you think is going on with my baby?” I asked him.

“Well,” he said, “because you and your husband are both from Ashkenazic descent and because of the way he is behaving, we are suspecting that he has Familial Dysautonomia, which is a genetic disease.” The doctor tried to console me, telling me that in case their suspicions were proven accurate, there is someone in NYU who is an expert in this field, who will be able to help us.

It sounded very frightening and complicated. I hung up the phone feeling utterly confused. Why couldn’t we go to this expert right away, and why couldn’t they tell me for sure what was wrong? (Looking back I am pretty sure that the doctors were certain that my baby had Riley Day syndrome, otherwise known as Familial Dysautonomia, but they wouldn’t tell me for fear that I would leave him in the hospital.)

Meanwhile, I was told that they had already taken blood from my little infant to check if he did test positive for this disease. Results would be back in two weeks.

After two and a half weeks in the hospital, my baby was discharged. But he never managed to suck his bottle for very long. We tried every nipple and every pacifier. On the first Friday that my baby was home, we realized that we were getting no place with the bottles. My husband flew to the local pharmacy and grabbed the first syringe he saw, coming home just in time for Shabbos. Thinking back, I never had a syringe in my house before that incident. Now our house stocks one in every drawer, pocket, carriage bag, and cabinet.

The first time I bathed my baby, I nearly had a fit. He was so skinny, I thought to myself, this is what the people in the concentration camps must have looked like. I proceeded to lower him in the bath. I was waiting for him to start screaming, the way my previous newborns did. He didn’t. He seemed very comfortable. He just closed his eyes and went right to sleep. I was shocked. I didn’t know what to expect next.

He used to wake up during the night screaming, as if he was ready to wolf down an entire bottle of my fresh milk, but he’d give up after 15 CCs. He arched his back and did not make eye contact. I felt totally disconnected from him. I thought of him as a “thing” and not a child. I don’t know which of us cried more. I was a basket case. I called my pediatrician and begged her to have them put a tube down his throat. Otherwise, I said, he would not survive. She refused.

Needless to say, my baby didn’t gain an ounce in a whole month. But my doctors still felt it was better than losing weight. They wanted me to make an appointment with the genetic team and the gastroenterologist in our local hospital. They also wanted me to have him evaluated by Early Intervention right away and--oh yes--bring him in every week to see how he progresses.

So began our march to the doctors.

We took him to Dr. M. in NYU, a renowned senior pediatrician. Dr. M. was very kind and asked us a lot of questions. After examining the baby, he sat down and told us that from his clinical point of view, the baby seemed healthy and was suffering from acid reflux disease. I mentioned to him that we were being advised to take our baby for genetic testing. He dismissed that, saying that today’s doctors have narrowed the range of normalcy. His words were a balm to our hearts, and we went home with a renewed feeling of hope. But my baby continued his crying and I continued to feed him with a dropper.

My appointment with the genetic team was coming up. I was panicking. I called Dr. M. and told him that I needed his reassurance again; after all, he saw my baby and he thought that everything was okay. He repeated what he told me in his office and I felt a momentary relief.

Upon arriving at the geneticist, we immediately felt as though we were under arrest. Three women (we didn’t know if they were doctors) marched into the room. They were all dressed in black, or so it seemed. The interrogation started. How many children do you have? Are all of them healthy? What about your mother’s family? What about your father’s family? And then they went on to my husband’s family. We sat there like two frightened puppies, feeling as though we had committed some terrible crime. I couldn’t imagine what they wanted from us. I began to wonder if they would ever notice that there was a baby – a human being --who was sleeping soundly on the examination table all this time.

The next few weeks were very difficult ones for our family. I was busy running with the baby to doctors and appointments. My older children were being put up at neighbors’ and families’ homes. They were feeling the brunt of having a very tired and worried mom and were beginning to ask questions, like, why did you have to bring home such a baby from the hospital, and will he ever stop crying?

A friend of mine who has a child with similar issues came to visit me one evening. She brought balloons to congratulate me. She also gave me a whole bunch of advice, which she thought I would find helpful. I thought she fell off the moon. Why was she congratulating me? Did she think I was excited to be a part of her group? I was not interested. I didn’t want anything to do with sickness and the like.

When my baby was about four weeks old, my pediatrician called me one evening. “Can you and your husband come over to my house tonight? I need to discuss something with you,” she said. I felt my heart drop a few thousand feet. Surely, she had the results from the blood work.

“Tell me,” I asked frantically, “you got the results, right? My baby has it, doesn’t he?” “I guess I have to admit that the blood work came back positive for Riley Day Syndrome,” she answered in a quiet tone. I burst out into sobs, even though deep in my heart I had known this information for a while. “Cry, mameleh,” she said.

And cry I did. I cried for myself. I cried for my husband. I cried for my children. I cried for my parents. I thought I would never be able to see the world again the same as I did before I had him. I felt alone and distanced from everything that was normal. Wherever I went, whatever I did, I kept seeing images of feeding tubes and crippled people in my mind. I couldn’t believe this happened to me. Me? A sick baby?! This was something that happened to other people, other families. What would my family say to this? What would my friends think? How would I be able to take him out in the streets? Would people cross to the other side of the street when they saw me? What would he look like? Would he ever be able to get married? How would I be able to do shidduchim with the other children? These questions hounded me day and night. I slept restlessly and woke up nauseous and petrified. I dreamt he was healthy. I dreamt he didn’t survive. I dreamt that we gave him up to some kind of institution. Then I dreamt that I was hugging and kissing him. I walked around the next few months in a daze.

Meanwhile, my son finally got to see the specialist in NYU. Sure enough, she had him admitted to the hospital for failure to thrive. At the tender age of seven weeks, my son had his G-tube inserted and he had a fundoplication--a procedure to tighten the bottom of the esophagus to prevent reflux and aspiration. The doctors promised me he would be a different child after this. In my naiveté, I thought he would wake up one nice morning cooing and smiling to me, gaining weight and thriving. It didn’t happen so quickly or so smoothly, either.

Since that initial hospitalization, we’ve made a couple of more stops in the hospital with him, but we’ve also made giant steps in maturity and understanding the ways of life.

Slowly, I began to come out of my stupor and began to bond with this little neshameleh.

We came from an angle of 360-degree denial to 360-degree acceptance and love.

It was hard at first, but the more we gave him, the more we loved him. His development came very slowly. But we davened and we tried to be very patient. We were very lucky to have the support of many friends, a wonderful family, and a very special pediatrician who stood by our side every day.

Today, our little tzadikel is almost 5 years old. He is one big piece of sunshine. He brings happiness to our home and to everyone who knows him. He is giving, kind, smart and one big bundle of nachas. Yes, he is delayed. And yes, we have our difficult moments--like when he goes into crisis for three days in a row with no end in sight, or when he goes into respiratory distress and Hatzalah has to take us to the emergency room. But our boychik is a strong fighter, and with Hashem’s help, he always comes through. We call him our little champion, our winner. He has a personality that makes it impossible not to love him. He is as inquisitive as can be and asks a zillion questions a day.

Currently, he attends a local Jewish school geared to special-needs children. He is adored by all his teachers and therapists. He understands both Yiddish and English completely and is constantly expanding his vocabulary.

Our son is fed primarily through his G-tube but lately he has made tremendous strides and is eating more and more by mouth. We are on constant alert for his medical needs and have a very close relationship with his specialist in NYU and of course, with his pediatrician, who is a part of our family. He receives intensive therapy both in school and at home. He is extremely lucky to have such special siblings who love him to pieces.

Do I still worry? Yes, as all mothers do.

But with him, it is very different. We learn to appreciate each day as it comes. We are thankful to Hashem who watches over him every moment. We are thankful that we live in a generation that is so tolerant and accepting of the special-needs community. A generation that is so full of chesed. A generation that we hope will be zocheh to greet Moshiach, when Hashem in His infinite kindness will heal all the sick.

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