A Balloon of Hope

But within the hour, when I was ready to be moved to the ward, the baby started to seize. His hands flapped uncontrollably, and his eye movements were unusual. The medical staff were alarmed, as were we.

He was having subclinical seizures, and it quickly became clear that his situation wouldn’t be an easy fix. Our balloon of hope was punctured, and we held our breath as he was whisked off to the NICU.

The nightmare began.

It was made worse by the attitudes we encountered. The NICU nurses treated our son like some type of alien. He was an enigma, and they didn’t know how to respond to him. He seemed healthy in so many respects. His weight and color were good. Yet his seizing was out of control, and his body temperature kept dropping.

Eventually, the doctors called us in for a meeting. They had a diagnosis.

Our hearts squeezed with trepidation.

“Your baby has a KCNT1 gene mutation,” they told us.

We learned that KCNT1 is associated with two distinct seizure syndromes, nocturnal frontal lobe epilepsy and malignant migrating focal seizures of infancy.

“He probably won’t live past the age of three,” the doctor informed us blithely.

Our world went black.

Giving Him Our All

WE refused to give up on our child. We were determined to do whatever it would take to keep our baby alive.

Our life had been upended for many months due to my precarious pregnancy, and now that the baby was born, it only got worse. I was home from the hospital, but the baby wasn’t, and Yitzchok and I were always running back and forth to be with him.

It was time to have a conversation with our other children and tell them what was going on.

“Imagine,” I told my two older children, “that your grandmother gave you a big gift. It’s wrapped beautifully with a big bow on top, and you can hardly wait to open it. But once you peek inside, you see it’s not at all what you wanted! What do you do? Do you tell your grandmother how disappointed you feel? Or do you smile and say thank you?”

I waited a beat, saw their nods of understanding, and continued. “Hashem gave us a special gift, a beautiful baby. We’re going to accept our gift, even if it’s not exactly what we wanted. He’s a precious neshamah, and he’s ours.”

I explained to them that the baby wasn’t well, but that we were going to do our best to care for him and help him grow. They responded positively, loving their baby brother and delighting in him when he finally came home.

Five interminable months passed, during which our baby was hospitalized. It was five months of drama, of numerous times when we almost lost him, and times when we thought he was finally stabilizing, only for him to plummet down a slope yet again.

In addition to his constant seizing, he also had heart problems and kidney stones, and his seizing was constant. He needed strong medications, but even that was complicated because he had tough veins, and drawing blood or inserting an IV was often impossible.

And then there was the matter of his bris. How we longed for our son to have one! Yitzchok and I decided we wanted to have it while he was still in the hospital NICU in case the bris caused an adverse reaction.

“Can we have the bris here?” we asked the medical team.

They agreed!

We joyfully arranged the doctor, a minyan, and a catered meal in preparation for the big day. And then, just when we were about to go and set up for the bris, we got the call.

“I’m sorry,” a nurse said, “but we don’t think he’s ready to have a bris yet.”

Another letdown. But what could we do?

Swallow yet again, lift our heads, and continue marching forward.

Although it would still be some time before our baby would have his bris, we were told to begin calling him by name for the sake of tefillah. And so, Tinok ben Shifra became Chaim ben Shifra, named in loving memory of Yitzchok’s grandfather. Once Chaim was medically cleared to have his bris, we planned to add a name and looked forward to that milestone with hopeful anticipation.

Meanwhile, his condition was finally stabilizing, and Yitzchok and I wanted to bring him home. He was on quinidine and Onfi medications, and his seizures had decreased significantly. However, the doctors and nurses discouraged us from bringing him home, insisting that our insurance would only cover his expenses if we put him in a facility.

I couldn’t believe what I was hearing.

“Are we back in the 1950s? Don’t we know that all children belong at home with their families?”

The doctors shook their heads. “What if he destroys your beautiful family because he’s always in crisis?” they argued. “So many parents can’t handle the stress and wind up getting divorced. Do you want to put your family through that?”

“How can I give up my child?” I rejoined. “If my child was healthy and got into an accident, would I give him up? Wouldn’t he still deserve a family? So why is this different?”

These conversations saddened me. But at the same time, they fueled my determination to give Chaim our all.

Flashes of Light

A few weeks later, Chaim graduated from the NICU to the neurology ward.

And then, the moment we had dreamed about for five long months arrived — he was finally declared well enough to come home. He was only reliant on a feeding tube, not oxygen, and it had been a while since his last flare-up.

But the dismal predictions continued.

“He’ll never develop,” the neurologist stated darkly. “Make your goal in life not to come back to the hospital.” They didn’t think we should expect more than that from Chaim.

Clenching my fists, I boiled over with rage. How dare you give up on my son? Perhaps one day he’ll walk and talk….

One week after Chaim left the hospital, we held his bris in our home. Our shul had a beautiful kisei shel Eliyahu from Hungary dating back before the war, and they allowed us to use it. As a precaution, we arranged for Hatzolah to be with us for the bris.

The bris was a very emotional event, and Chaim was officially named Chaim Eliyahu. Eliyahu Hanavi comes to every bris, and it was our fervent tefillah that Eliyahu Hanavi would effect healing for Chaim while he was there. My sister’s father-in-law, with whom we’d been very close, was also Eliyahu, and he had a remarkable history of overcoming the Malach HaMaves numerous times. We hoped this would hold for our dear Chaim, as well.

As the weeks passed, we realized Hashem had gifted us with a unique child.

He was “nonverbal” in that he didn’t communicate with sounds like an ordinary baby or roll over or move around much.

But during the good times, when he was developing, he babbled, sucked on a pacifier, and was a little more playful. When he grabbed my necklace or sheitel, I was thrilled. And when I sang to him, and he moved his hands in time to the melodies, I was overjoyed. For Chaim, this was major progress!

Chaim’s health was always precarious, and we never knew when it would spiral downward. Throughout his year of life, he kept getting sick. He had pneumonia and rhinovirus and was in and out of the hospital every few weeks with a different virus that often caused his situation to become critical.

His inability to have an IV administered was also a tremendous worry. As he couldn’t swallow, it meant that if he got sick, he couldn’t be given lifesaving medications.

We arranged for him to have a port inserted, a procedure that was originally scheduled during the week of my nephew’s wedding around Shavuos. To our frustration, the hospital kept pushing it off because of scheduling conflicts. They finally rescheduled it months later, in the middle of July. This was during the Nine Days, and my mother became extremely upset when she found out.

“It’s not a good time for surgery!” she said.

Disappointing my mother was the last thing I wanted to do.

But we felt that Chaim couldn’t wait any longer for the procedure. It was a matter of pikuach nefesh.

“Mommy,” I said, “what happens if he gets sick tomorrow, and we can’t get an IV in?”

The surgery day arrived, and Yitzchok took Chaim for the procedure; I came a little later. For some reason, it was taking an inordinately long time, and I became increasingly nervous as the hours ticked by. Finally, the doctors explained that the first insertion had been unsuccessful because one of the pieces had malfunctioned. They had to make another cut to insert the port.

Unfortunately, Chaim wound up in the PICU following this procedure. His condition was touch and go, and we weren’t sure if he’d make it. We davened, pleading for our baby’s life. B’chasdei Hashem, he recuperated and eventually was able to be discharged.

However, even when he came home, he still wasn’t himself, and we were very concerned. He experienced several flare-ups of uncontrollable seizures, and he was always cold, unable to maintain his body temperature.

Insurance regulations stipulated that Chaim get nursing coverage. With my mother living with us and our other four children, space was at a premium. Yitzchok worked on converting our attic into a bedroom while I attended to Chaim’s needs, and together with my mother, kept the household running. We were on edge, our nerves frayed by Chaim’s condition.

One Shabbos, we noticed that Chaim was acting strangely. His breathing was labored, he was blowing bubbles, and he was moving his hands in unusual ways.

I asked my neighbor, a nurse, to come and look at him.

“Something’s not right,” she agreed.

We called Hatzolah, and they rushed us to the hospital.

During the ride, Chaim’s breathing got worse. His whole car seat was shaking from his labored breathing. During the next few days, we almost lost him. “Hashem!” we cried. “Please!”

It turned out that Chaim had MRSA in his blood, and his lungs were full of water. To our shock and horror, this situation was the result of inadequate cleaning at the site of his port. He was put on a  ventilator turned to the highest setting, and they were considering putting him on a respirator. They had to drain water from his lungs, and his condition was severe enough that the doctors panicked. Baruch Hashem, they found the right medication to combat the MRSA infection, and to our immense relief, he started to improve.

But then he started to seize uncontrollably, almost every five minutes.

I was so grateful that my older children were away in summer camp while this was happening; it would have been a disaster if they had been home. Every morning, I left to be with Chaim. My days in the hospital were very isolating and draining, and I barely saw Yitzchok. When I got home after a full day in the hospital, he left to take his shift.

It was exhausting, yes. Challenging, very. But there were always glimmers of light peeking through. Once, our friends were visiting Chaim in the hospital and telling him stories about fire trucks. For the most part, he was unresponsive, but he suddenly perked up when he heard about the fire trucks. What joy that gave us!

I dragged myself home each day after spending it in the hospital with Chaim. I often wound up not eating so I wouldn’t have to deal with serving myself and cleaning up.

When my mother would ask how Chaim was, I was afraid to tell her the enormity of what was going on.

And yet, those sparks of light kept flashing. One day, Aharon Dovid, our oldest son, video called while I was in the hospital. Chaim perked up and looked around to see where the voice was coming from. I laughed along with Aharon Dovid, thrilled that Chaim was responding.

That first winter of Chaim’s life, with its many health crises, had especially exhausted me, and by the Shabbos after Purim, I felt completely burnt out.

I was sweeping my kitchen floor when I heard Chaim’s machine start beeping. Sometimes it did that for no reason, and I didn’t feel like rushing up the stairs for nothing. Besides, I just wanted to finish sweeping! Was that so much to ask?

“Shifra, come upstairs NOW!” I heard my mother scream.

I dropped the broom and dashed upstairs. To my horror, Chaim was hemorrhaging from his nose. His machine said his oxygen was in the low 70s. My terror mixed with guilt. Why did I think it was okay to finish sweeping? Tears streaked down my cheeks, and with trembling fingers, I called Hatzolah.

Within minutes, Hatzolah suctioned the blood out of Chaim’s mouth, enabling him to breathe and thus saving his life. They wanted us to call 911, but we felt it was no longer necessary. Why would we rush Chaim to the hospital on Shabbos now that he was fine?

After the drama was over, I remembered that my oldest child also had a severe nosebleed at around the same age as Chaim was now. Was this a tendency for boys in our family? I hoped it was just a onetime episode.

A few days after Chaim’s pulmonary bleed, he started hemorrhaging from his nose a second time. Frantic that it was happening again, I called Hatzolah and 911. Hatzolah came immediately, suctioned Chaim, and once again saved his life. After that, an ambulance, the police, and the firemen showed up.

Since this was already the second episode, we agreed to send Chaim to the hospital. Chaim went in the ambulance, and Yitzchok followed behind in the car. That night, Chaim developed hacking coughs, and he started bleeding again. The flow decreased, but the next night, every time he coughed, he started gushing blood from his nose. The hospital was very alarmed, and he was admitted to the PICU.

The hospitalization dragged on. Each time they were supposed to do a CT scan, an emergency case was always given preference. Eventually, they did the scan and agreed that this had just been a pulmonary bleed.

Figuring out how to resolve the problem was challenging.

By connecting with other families whose children had the same diagnosis as Chaim, we found out about two procedures that could be done for pulmonary bleeds. One child in our “group” had one of the procedures, but it wasn’t effective. She continued having pulmonary bleeds and eventually died. We opted for the other procedure, embolization, which blocks the blood vessels that kept on erupting. It is a high-risk procedure, and we were frightened. We weren’t ready to give our consent yet.

Meanwhile, Pesach was looming, and I was trying to clean in between running back and forth to the hospital. Yitzchok wound up taking extra shifts with Chaim so that I could get the house ready.

One day, I was with Chaim in the hospital and talking to my sister about Pesach clothing. Suddenly, Chaim had a seizure, bit down on the ventilator, blocking the flow of oxygen, and turned blue. Alarms blared, and I immediately hung up on my sister.

A resident grabbed the bag to pump oxygen into Chaim’s nose, but she wasn’t doing it properly, and time was of the essence. The doctor sent her out of the room and proceeded to do it himself. As Chaim began to breathe, we, too, caught our breath.

The episode was so harrowing that Chaim needed a blood transfusion afterward.

Everyone had the same goal: to keep Chaim’s mouth open so that he wouldn’t bite the ventilator and cut off his oxygen supply again. But no one seemed to know how to achieve it until one Friday night, a nurse sitting next to his bed, which in itself is unusual, came up with an out-of-the-box idea. Taking a handful of tongue depressors, she wrapped medical tape around them and stuck them in his mouth like a lollipop. Lo and behold, it worked! A little creativity and a dose of caring saved the day — and Chaim!

Throughout our battles for Chaim’s life, the doctors continued to be harbingers of doom. One day during this hospitalization, the medical staff called my husband and me in for a meeting and asked a gut-wrenching question that no parent should have to answer: “If Chaim stops breathing, do you want to sign a do-not-resuscitate order [a DNR]?”

They tried to convince us that it would be better for him and our family if Chaim died peacefully.

Appalled, I stood up.

“This meeting is over,” I said. “Please resuscitate him as many times as necessary.”

Precious Jewel

AS days turn into years, this pattern of stability and instability continues. A simple virus can be fatal for Chaim. A family getaway is never a vacation.

Yet throughout the tumultuous years of Chaim’s life, we’ve learned to treasure every minute.

Chaim has gifted me with a world of love, compassion, and understanding, a world that can’t be contained in words. I’ve learned to take one day at a time and to enjoy whatever I have. One never knows what will happen with a medically compromised child, so I continually hope and daven that Hashem will bring a yeshuah.

Every day he’s alive is a miracle, and we love him always.

Our children treasure him as well, and his older brother has an especially close relationship with him.

Yet as hard as it has been, our children rally around Chaim. Whenever he got sick, he regressed in reaching his milestones. His few steps forward were quickly reversed with the newest malady, and it was so discouraging — for us and the children. But they were determined, loved interacting and playing with him, and wanted him to move forward. I still remember when Chaim first turned over a few times. Our house exploded with laughter and joy — the kids were thrilled with Chaim’s accomplishment!

Sometimes, the situation is challenging for them, and they wish we could go on vacation like other families do. For that reason, I try to take them away in the summers.

My oldest daughter once asked, “Can you tell the nurse not to turn on music on Shabbos for Chaim?”

Our eyes met, and I replied, “Well, who will play with him then? Should he just sit in his crib with nothing to do?”

It was as if aa light went on in her mind, and she said, “You’re right. He should have his music. And I should go spend more time with him!”

Chaim is our jewel, and we all want him to be happy. A precious neshamah, he’s taught me the value of every moment of life. He’s a model of resilience, courage, and simchas hachaim for all of us.

(Originally featured in Family First, Issue 901)