Currently I am a stay at home mom to three children Nate (age 12), Jonah (age 10) and Eva (age 6) in suburban New Jersey. When my oldest was nine months old I made the decision to leave my career in the nonprofit fundraising world. Nate was an ideal baby. He was generally calm, only cried when he was hungry, and to our delight slept through the night early. My husband Michael and I attributed it all to our awesome parenting. We decided to add to our family, despite former struggles with infertility. Thankfully, our doctor knew just what to do and I quickly became pregnant with our middle child, Jonah.
The pregnancy was relatively easy, despite my constantly running around after Nate, now a toddler who didn’t want to nap. In my third trimester, while I was still feeling okay, I was measuring “big” in my ultrasound which revealed a potential 10 + pound baby if I went to term. My ob-gyn subsequently scheduled me for a c-section a week early since she feared for our safety. In the meantime, I was often asked if I was carrying twins or had gestational diabetes. Word to the wise: neither question is acceptable questions to ask a very pregnant woman! From his red hair and blue eyes, fractured clavicle, a urological issue and the most distinct high pitch and loud cry, arriving a week early Jonah made an undeniably big entrance into the world. Just shy of nine pounds, we weren’t shocked that he loved to eat and also to be held.
When Jonah was about two and a half months old, I was playing with his legs and noticed that one seemed much smaller than the other, both in length and girth. In that moment, I automatically blamed myself, believing that by being squished inside my small frame one side of him became atrophied.
I mentioned my discovery only to Michael not wanting to worry anyone else unnecessarily. I waited two weeks for Jonah’s next appointment to even bring it up to his pediatrician. The doctor examined our son and said it looked like ‘hemi-something or other,’ but she first wanted to do a little more research. At home, I couldn’t remember the name of the condition and I forgot to ask her to spell it so I couldn’t google it. Perhaps it was just as well. In my mind, this diagnosis would just mean his wearing a lift in his shoe. To me, in the scheme of life, it wasn’t so terrible.
The next day, the doctor followed up with us by phone and said she was pretty certain Jonah had hemihypertrophy, an overgrowth disorder which causes one side of the body to grow at a faster rate than the other. However, in addition to the orthopedic aspect, she said that hemihypertrophy is also associated with a higher risk of certain childhood tumors – hepatoblastoma and Wilm’s Tumor. She also mentioned that hemihypertrophy can also be a sign of certain genetic disorders and while she wasn’t convinced he had one, she suggested we consult a geneticist.
Of course, being a master of google and WebMD, I did some research and saw that it was possible that he had Beckwith-Wiedemann Syndrome (BWS). Before that July, I had never heard of either hemihypertrophy or BWS – only one in every 11,000 children is affected. We met with the geneticist and regardless of whether he had an isolated case of hemihypertrophy or BWS, a protocol had to be established. The geneticist recommended Jonah have bloodwork drawn every six weeks to check the tumor marker for hepatoblastoma until the age of four and a quarterly abdominal ultrasound until the age of eight. In addition, it was recommended he see an oncologist to verify the protocol and be followed by an orthopedist for the hemihypertrophy.
After the appointment, we went immediately for Jonah’s first bloodwork. Unfortunately, the lab tech wasn’t experienced with babies and it took multiple pokes and finally someone more experienced to draw his blood. His blood would also be tested to see if he had the genetic markers for Beckwith Wiedemann Syndrome, which a month later, came back positive. Shortly after, he went for his first ultrasound.
Michael, who is normally a very open book (I often have to kick him under the table), didn’t want to tell people other than our immediate families and closest friends. This was not because he was embarrassed but more out of protection for Jonah who he feared would be scrutinized and looked at and treated differently. In retrospect, it was very difficult for me since it was such a huge weight for me to carry. Over time, with the exception of my mother who always could sense when the blood work or ultrasound was coming up, no one who knew even asked me about it. Perhaps they, like Michael, were able to compartmentalize it. It often felt isolating. On occasion, when it was feeling like it was hanging over me, I’d confide in a friend.
While rationally I knew that Jonah had a 90% chance of not developing cancer, the fear of his being in the unlucky 10% loomed over me. Every stomach ailment, I immediately thought the worst. In the beginning, until I heard everything was okay, I would research the best pediatric surgeons and oncologists for the two tumors. I needed to have a plan in place if we got the news that Jonah did indeed have cancer. Would we take him to a major cancer center or a children’s hospital? Would we use the doctors who were on the “best” lists or go for the younger doctors at the hospitals who had the great reviews on Vitals and trained with the best? Fortunately, we didn’t have to make those decisions.
The bloodwork was horrid even though we took Jonah to the local children’s hospital where they were experienced. A classic Jonah line was “I want the doctors to take their doctor things away so they can’t hurt me.” When Jonah was about two he could tell when we were driving to the hospital and would get hysterical. It often took me and two others to hold him down while the technician would draw the blood. The ultrasounds, which were totally painless, became difficult when Jonah was a toddler but a lollipop after checking certain organs kept him still. The ultrasound department at our local hospital became part of our family, watching both Jonah and his siblings grow up. At his last appointment, they even threw a party to celebrate his being cancer free.
In all the years of monitoring, we always told Jonah that we were making sure something wasn’t growing in his belly that could make him sick, but we never mentioned cancer to him. It wasn’t until his last ultrasound that we told him that we were looking for cancerous tumors. Coincidentally, my father was facing cancer treatment when he turned eight and the monitoring ended so it made it more tangible.
While the worst is behind us, Jonah’s leg length discrepancy will have to be addressed in the next few years with surgery rather than the lift he currently uses. At our most recent appointment, his orthopedist told us about a new technology for leg lengthening which is much less invasive and risky now. Now, instead of just slowing the growth plate on the longer leg (which would make him 2 inches shorter), he will also have leg lengthening surgery on his shorter leg. As someone whose nickname was “Little Lesley” growing up (I could write a whole flaunt about that), I have to admit I was thrilled for him!
Thankfully, Jonah has hit all his milestones on time, despite his physical difference. At ten, Jonah is now an incredibly intuitive, insightful, emotionally savvy, smart, athletic, funny kid and can get blood drawn without even flinching. He definitely does have some anxiety, which is not surprising given how stressful those first four years in particular were. I know that I carried a lot of stress worrying about him and he definitely felt it. On a positive note, sharing Jonah’s story has encouraged others to open up about their own adverse experience.
This past year, Jonah effortlessly wrote his own DHIFI Inc. “Kid’s Flaunt” essay about his
difference. I am amazed how easily he wrote it as well as how comfortable he was being interviewed about it by Scholastic. One of the questions Jonah was asked was if he had discussed having BWS with his class before he wrote his Kids Flaunt contest essay. Jonah replied no. He never thinks of telling people. Harkening back to all those appointments together where he was poked and prodded, I couldn’t help but ask why. Jonah turned to me matter-of-factly and said, “Mom, because it doesn’t define me.” As his mother, after all we’ve been through together, Jonah’s reply reaffirmed the notion that experiencing any form of adversity can be transformative and ironically, even a positive.
Lesley Schonberger Arlein Arts ’95 (Independent Major) is a stay-at-home mother of three children. Prior to this she was the Assistant Director of the American Friends of the Israel Philharmonic Orchestra, a nonprofit organization dedicated to raising funds for Israel’s cultural ambassador. She currently resides in suburban New Jersey with her husband, Michael, two sons, Nate and Jonah, and a daughter, Eva. In her spare time, she enjoys cooking, playing tennis and recommending the numerous wonderful doctors and medical professionals she’s encountered over the past ten years.