A Healing Heart| December 5, 2012
No matter what, you can overcome
The rosy beginnings of Mordechai’s life began to fade at the three-month mark when the pediatrician was unhappy that he wasn’t gaining weight. At a thorough four-month examination, the doctor detected a heart murmur.
“He didn’t tell us Mordechai had a murmur,” Joyce remembers. “He just sent us to do a chest X-ray. This was on a Thursday night. I was completely numb, overwhelmed, in shock; it was so sudden.” The X-ray showed an abnormality in Mordechai’s heart, and the presence of fluid in his tiny lungs.
The next day, Joyce and her husband, Avraham, found themselves at Toronto’s Hospital for Sick Children, booked for an ultrasound, an echocardiogram, and finally, an appointment with a pediatric cardiologist. “While they were doing the ultrasound, the technician kept going over his chest, again and again. We could see that she was concerned. We started to think that he had a hole in his heart.”
Congenital heart defects are fixable, and in many instances, self-repair over time, the Morels comforted themselves. Holding on to a thin strand of optimism, they sat across from the doctor on that fateful Friday morning, hoping for the best.
“You have a sick child,” the doctor intoned, opting for the honest, if brutal, approach. “And no matter what we do, we’re never going to be able to fix him.”
They then heard the diagnosis: Little Mordechai had a variation of hypoplastic left heart. Instead of four chambers, his heart had three.
Their lives would never be the same again.
Everyone was so supportive
“My husband and I just looked at each other, and I remember my tears falling. The doctor’s words were like a slap in the face. But his diagnosis was 100 percent correct.”
Only later would the Morels discover that with the extent of his defects, Mordechai had a 5 percent chance of surviving his first year. With one of the ventricles missing, his single pumping chamber had to do the work of two — and it was the larger ventricle that was absent, creating an overwhelmed and ineffective cardiac system. As oxygenated blood got pumped back to Mordechai’s heart, the faulty architecture caused it to be mixed up with the unoxegynated blood, which then got pumped back through his body.
Mordechai’s oxygen saturation was woefully low, leaving him tired and weak so that even eating was too much for him. Overnight, Joyce had to become a skilled nurse, as the baby needed to be tube-fed, first by a nasogastric tube, which needed to be changed every few days, and then by a gastric tube, which pumped liquid nutrition directly into his stomach.
The operating room became a familiar sight. Mordechai’s first surgery was done when he was five months old, and would be followed by three more heart surgeries — two of them open-heart — and dozens of other interventions. Mordechai’s name was augmented with the prayerful “Alter” after a particularly harrowing medical scare. But despite all efforts, he was still in congestive heart failure. His heart was failing to pump properly.
The outpouring of support, love, and practical, hands-on chesed of the Toronto community was inspiring. “Everyone was so supportive, everyone was sensitive to our needs. People did car pools, made food for the family, brought us food in the hospital every single day. It was just incredible!” Joyce says. “There was so much compassion and understanding in countless, critical ways.
He was too weak to go upstairs
At four years old, Alter’s condition stabilized. He was healthy enough to go to school, if too weak to play sports or exert himself. He grew a bit, if not exactly on the charts. The red-haired, hazel-eyed miracle baby, who had been on every Tehillim list in the city of Toronto and beyond, had blossomed into a petite, fun-loving, precocious child, who laughed at his hefty medical file and focused instead on enjoying life, full steam ahead. His classmates rallied around him making up games that Alter could play. When he was feeling unwell, they took turns staying in the classroom with him during recess.
The Morel household, which had done an extended multiyear stint in intense emergency-mode, slowly awakened, yawned, and stretched into some semblance of normalcy. But at ten years old, disaster struck again. Alter Mordechai was once again in congestive heart failure. Gradually, insidiously, his heart had been giving out. And this time, the only salvation was a heart transplant.
“We knew all along that his heart wouldn’t last a lifetime,” Joyce admits. But as always, HaKadosh Baruch Hu sends the refuah before the makah. A year before Alter Mordechai needed his transplant, Toronto’s renowned SickKids Hospital, who had treated him from the get-go until now, began specializing in pediatric heart transplants.
Heart transplant! This complex, intensive procedure, fraught with halachic intricacies and mortal danger was the next stop on Alter’s journey. The Morels received a definitive psak: for their son, at his age, at this time, in the city of Toronto, he could — and should — undergo the transplant. “It was very specific to his case,” notes Joyce, “not a blanket heter.”
It was a mere month after he was listed, before Alter’s heart arrived, at which point he was deteriorating with every passing day. His skin was tinged an oxygen-deprived blue, he got short of breath walking across the room. “It was a terrible thing to see. That’s one of the only times Alter ever cried, when he was too weak to go upstairs.”
Get me a heart!
How does a ten-year-old boy internalize the looming prospect of undergoing transplant surgery, and absorb the idea of accepting a deceased person’s vital organ? “Very matter-of-factly!” Joyce laughs. “It was nothing ethical or esoteric for him, or for us. It was just a matter of, ‘Get me a heart!’ Indeed, when the transplant was imminent, Alter looked his mother full in the face. “Was the person niftar yet?” he asked. This same maturity shone through when it came time to sign his consent for the procedure. “I’m too scared to say ‘yes’ to the transplant because I know it’s very dangerous,” he told his parents. “So I want you to give the consent instead of me.”
Brave, spine-tingling words from a young boy, and very typical of Alter Mordechai Morel. “I was very proud of him that he could get past his fear and express his fear, and yet he really knew what he had to do,” Joyce says. Still, how did she feel, signing the consent form, knowing that there was a terribly steep chance that her son might not make it? “There was no choice. He had to have the transplant. He couldn’t survive without it.” It was the first time in their ten-year ordeal that Joyce and her husband, Avraham, faced the fear that their son would not make it. “We got a brachah from the Manchester Rosh Yeshivah, who told us, ‘Tzu langeh yuren, im yirtzeh Hashem he’s going to live a long time.’ That gave us a lot of chizuk.”
The transplant did not go as smoothly as hoped. Due to the numerous heart surgeries Alter had undergone, his chest area was full of adhesions, the medical term for internal scar tissue, and during the operation, his vagus nerve — which controls breathing — was nicked, putting Alter on a ventilator in the ICU for weeks after the transplant. Still, the overall surgery was a success.
This is what we need to do
“He was pink!” Joyce exults, citing the first, most obvious results following the transplant.
After three months of recovery at home from his immuno-suppressed state, and having his new heart regularly biopsied to fine-tune and monitor his anti-rejection transplant medications, Alter was finally given a gift his parents had hardly dared to dream of: a clean bill of health.
“His life completely changed. He could breathe, run, play, everything. He was supposed to be a regular person from now on.” Joyce’s face is wreathed in smiles, just remembering that delicious moment. How did Alter take it? “He took it the same way he takes everything — matter-of-factly. He’s so down-to-earth and he has such simchas hachayim that whatever situation he’s in, he’s happy. He never complained throughout his illness; he took everything in stride.”
There was no question that Alter’s medical saga had changed the Morel family forever. While Joyce had started off as a stay-at-home mother, and believed very strongly in being present to raise her children, HaKadosh Baruch Hu had other plans. “My family had to become more independent and function without me as I was taking Alter through all his procedures. My girls grew up very quickly and took a lot of responsibility around the house. We had a nanny, which made all the difference, but there’s no question that everyone had to grow up fast.”
She is open about the challenges — emotional and spiritual — that accompanied her from the moment of Alter Mordechai’s diagnosis and beyond.
“It was very, very hard for me to accept this situation. First I thought that having Alter was a punishment for something terrible I had done. That was very hard to handle. But then, over the years, as I was coping well with having him and doing a good job of parenting this special kid, I slowly realized that I was growing in who I was. I grew in bitachon and frumkeit and in self-esteem.”
Joyce started a support group for parents of special-needs children together with some other women in the Toronto community. While the support group eventually fizzled out, it gave birth to something lasting and fundamental: Zareinu, the renowned school for special-needs children.
“Taking positive action during the struggle was very instrumental in helping me come to a new place,” Joyce explains. “Raising a child who’s sick is a big challenge in so many ways. It affects the whole family. The rest of the kids had to pull their weight. They were jealous of the attention that Alter got, jealous that he could have whatever he wanted to drink or eat. It was hard, and we talked it through, but our way was not to ‘compensate’ for it, not to ‘make it up’ to the other kids because of their ‘difficult life circumstances.’ Our message has always been: This is our life and this is what we need to do. And they seem to have risen to the occasion.”
The challenges of illness take a toll on a marriage as well. “It was very difficult on our marriage in the beginning. We saw things differently — I always looked at the worst-case scenario, while my husband, Avraham, always looked at the best-case. We eventually divided roles. Because I was medically inclined and tied to Alter, Avraham took a backseat in the medical decisions and took care of the kids — he had a lot to give them, and a flexible schedule, while I took care of Alter’s health issues.”
Through the turbulence and stress, and awash in a host of painful emotions, Joyce received insight and clarity that gave her the strength and tenacity to hold on.
“One thing that helped me to come to terms with having a sick child was something I heard from Rebbetzin Feige Twerski. A good friend of mine had a child who was born with a complex heart problem; the child lived her life in the ICU and then died. My friend was devastated. Rebbetzin Twerski said to her, ‘If Hashem were to come to you and say, “I have a special child who needs parents to care for her for seven months. Would you do that for Me, please?” What would you say?’ Hearing that helped me find the right perspective and internalize that I was the one who was chosen to be Alter’s parent. He came the way he was supposed to be created. This was his tafkid — to be born with his heart condition — and my tafkid is to be his parent and bring him up.
“Having him and going through the challenges of helping him turned me into the person I am today. I wouldn’t be who I am; I could never have accomplished what I did without having him.”
Everyone thought I was crazy
Courageous, poignant, and inspiring words from a woman who, at the age of 37, having taken Alter Mordechai through ten years of medical marathons, became … a doctor!
“Since second grade, I dreamed of being a doctor. But I ended up getting married at 19, had a baby, and didn’t want to leave her in day care to go to school — so that was that.” Well, as they say, Man plans and G-d laughs. The Ribono shel Olam definitely had the last laugh, because one day, as Joyce trundled between Alter’s bed in the post-op ICU at SickKids Hospital and her father in-law’s bed in the ICU at nearby Mt. Sinai Hospital, the thought flashed through her mind: I should do this!
It was so daring, so intriguing, and so eminently realistic that before she knew it, she had been accepted to medical school at McMaster University in Hamilton, Ontario, as a “special applicant” — a status given to someone who had never finished an undergraduate degree, never attended university full-time, and had made a contribution to society (helping found Zareinu was Joyce’s contribution). “Of course, the first thing I did was speak it over and get daas Torah. And my husband was very supportive. But everyone else thought I was crazy — including my family.”
Joyce admits that it wasn’t easy for her children to accept the idea that their mother was leaving the nest to pursue a medical career, especially after a long hiatus away taking care of Alter Mordechai. One of her children, who was initially very opposed to the idea, later wrote an essay citing her mother’s decision as one that changed her life for the best. Still, it isn’t something Joyce recommends to others.
“The heter I got took into account that I was an established, married woman, in a good, loving relationship, living in a frum community. But going to university was a total shock to my system, to my life, to everything that I had grown up knowing and understanding.” She was horrified when, on the first day of school, her biology professor announced, “You need to understand that evolution is a fact. And if you don’t believe that, you don’t belong here.”
Her coping mechanism was to keep to herself, and do what was needed to get the job done. It was an intensive program, cramming four years of study into three, and to add more spice to the mix, in the midst of Joyce’s first year of medical school, Alter’s transplant heart arrived. But through it all, she stayed in school. Yes, Alter required full-time care after the transplant, but Joyce’s school schedule was mostly self-study, so while she needed to be in Hamilton for tutorials, most of the time she could be at Alter’s side in the hospital. After a residency in family medicine, Joyce Morel, MD, was ready to shift into yet a new family dynamic, fulfilling a bargain she and her husband had made at the outset of her schooling: Avraham left his property-management business to learn in kollel.
We never hid his illness
Finally, things seemed to be humming along smoothly and the only excitement in the Morels’ lives was bar mitzvahs, weddings, and the delightful arrival of grandchildren.
But the past was, unfortunately, not behind them. At age 15, Alter started to develop coronary artery disease in the transplanted heart, a micro-rejection phenomenon that occurs in a percentage of transplant recipients. The doctors were adamant: Alter Mordechai needed a new heart, again.
“It was devastating to hear, especially because this time, he was completely healthy. And because the first transplant had been very hard on him, Alter wasn’t looking forward to going through it again.” Alter got on the list for another transplant. It took two years for his heart to come. He was 18 years old at the time, a legal adult who had to sign his own consent. “But he was confident this time. The fact that he was healthy for this operation worked to his advantage.”
The second transplant went wondrously smoothly and Alter was ready for discharge less than a week afterward. Everyone breathed a sigh of relief. But there were more twists and turns to navigate. Aside from severe viruses and infections he had to combat along the way, Alter developed lymphoma, a post-transplant phenomenon, different than the typical cancer, a result of the transplant medications. Now, they were back at the hospital, but instead of visiting the familiar cardiology ward, this time they were there for chemo.
“It was a difficult time, but he got through it — and with such a positive attitude.” Joyce’s praise is understated, but it speaks volumes of a boy who has been through more by the age of 20 than people triple his age. Baruch Hashem, after treatment Alter was considered cured from cancer. While he will always need medical attention from infectious disease specialists to ward off the viruses that attack his suppressed immune system, and transplant cardiologists to monitor his heart, he lives a regular, rich life. Today, 27-year-old Alter learns and is studying web programming on the side. “And we’re looking for a shidduch!” Joyce says, her eyes sparkling. Who would have ever believed this was the baby his doctor condemned as “very, very sick”?
Perhaps one of the Morels most fastidious missions has been to define Alter’s essence as a completely 100 percent normal person — not a “case” and not a nebbach. “He’s not unaware of his limitations, but he doesn’t feel that they define who he is. We’ve been very matter-of-fact about it all the time. This is our tafkid. We never hid his illness. We made a decision on that first day when we found out what the problem was, that we would be open about it because we wanted everyone to daven for him. And there’s nothing to be ashamed of,” Joyce says sincerely.
He has the most wonderful life
The Morels recently underwent a transplant of another kind, when Joyce and Avraham made aliyah to Israel to join their four married children — although Joyce still travels back to work in emergency medicine in Toronto while pursuing licensing in Israel. The move has been wonderful for everyone.
“That doctor,” I ask Joyce now. “That doctor who first dropped the bombshell. What would you say to him today?”
Across the table, she looks at me and bites her lip.
“I would tell him, ‘You were right. Alter’s condition couldn’t be completely fixed. She blinks. “But on the other hand, he’s the most together person you could ever meet. He has simchas hachayim. He has gratitude to Hashem for all that he has survived and overcome. And he sincerely feels that he has the most wonderful life in the whole wide world.”
There is well-deserved pride in her voice, but it is her parting message that truly speaks volumes.
“I have tremendous hakaras hatov to Hashem,” Joyce warmly exclaims. “Looking back at the last 27 years, I can’t believe all the chassadim He has given me — a loving husband and family, health, miracles, a new career, and now the zchus of living in Eretz Yisrael. Every day I feel, ‘katonti mikol hachassadim,’ I feel small because of the good Hashem has done for me.”
(Originally featured in Family First, Issue 319)
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