A Mother's Journey with a Child with Williams Syndrome

Hadas Cohen never expected to be the mother of a child with special needs, nor did she anticipate how much good would come of it. Hadas's first pregnancy ended in a stillbirth, followed by another pregnancy that resulted in the birth of her eldest daughter, Arbel, now 14. A year and nine months later, Yo'av, now 12, was born. After another pregnancy ended in a natural miscarriage, Hadas became pregnant with Mai, the youngest daughter. "We did all the necessary tests during all the pregnancies, and everything was normal," Hadas recalls. "We went to private doctors, I had amniocentesis, and there was nothing to indicate anything unusual."

Mai was born naturally nine years ago at a normal birth weight, but from the day she was born, there was something different about her behavior. "From the very first days in the hospital, Mai screamed a lot," recalls Hadas. "It was clear she was in great discomfort, and I thought maybe there are babies like that too. I remember the maternity companions around me whispered, 'What is she doing to her child that she's crying all the time?' I was an experienced mother, nursing and changing diapers, but nothing helped; Mai just wouldn't stop screaming."

When the two were discharged from the hospital, Mai's condition didn't improve. A doctor identified a tongue-tie condition, which was released a week later, but it didn't stop Mai from screaming. "The first year was just horrible. The child wouldn't stop screaming, and it was impossible to manage the household. Arbel was 5, and Yo'av was 3, just starting at a new kindergarten. I found myself driving them to kindergarten each morning, leaving them screaming because they found it hard to part, and coming home to Mai's screams. It was just crazy. No matter where I went, I left behind screaming children."

When did you realize you needed to investigate the source of all the crying?

"We continuously checked. Initially, they said she had colic, then we took her for acupuncture. She would scream all the time, in every situation – on the stairs, while nursing, during car rides. At some point, I realized maybe there's something I'm missing, so I asked the family doctor to check her with a stethoscope. After the examination, he said he heard something in her heart and that I should immediately see a cardiologist. It was a bit alarming."

The Doctor Called Me an Anxious Mother

Mai underwent a cardiologist examination at just five months old. He informed Hadas and her husband Tamir that their daughter had a narrowing in the pulmonary valve. "He said it wasn't dramatic, that at most, she wouldn't be athletic. I asked if that's why she cries all the time, and he replied no. That it wasn't related to the screams, and that I should continue raising her like I did with my other two children."

Despite this, Hadas understood that Mai would need special attention, so she decided to stay at home with her instead of placing her in daycare. "She started showing developmental delays. Initially, she turned over at the right age, but then all sorts of problems arose."

Mai did not sit or crawl, struggled with breastfeeding, and developed strabismus in her eyes. Hadas asked the doctor to examine her again, but he accused her and called her an "anxious mother." Hadas knew in her heart she wasn't just imagining things and that there was an issue not yet uncovered, so she went to child development services. Mai was examined by a developmental doctor who still didn't identify anything. "He saw her, with the strabismus, with the facial features, the whole package, and still didn't notice anything. It's just a crime."

All the signs Hadas described indicate that Mai has Williams Syndrome. It's a rare genetic syndrome caused by a chromosomal abnormality. Those with it have unique facial features, including prominent lips and a wide mouth, strabismus, cardiac issues, feeding difficulties, sleep problems, and more.

Hadas with her daughter Mai. Photo: Adi Cohen

Didn't you notice anything different about Mai's physical appearance at that time?

"A parent can't see these things in their own child. Tamir always said she would be very beautiful. I still think she is beautiful, but I couldn't recognize it back then. The doctors couldn't either – developmental pediatrician, orthopedist, pediatrician, family doctor. They all saw and said nothing. She faced many difficulties – she didn't sit, she didn't crawl, she didn't eat solids, she couldn't swallow. We ran from physiotherapy to osteopathy, from place to place, and everyone said everything was fine. On one hand, I was happy to hear everything was fine, but on the other – nothing was fine. I couldn’t imagine they didn’t identify the syndrome because they weren’t aware of its existence. Meanwhile, time was passing."

At 11 months, Mai wore glasses even though she still couldn't sit up by herself, and at 15 months, she underwent surgery to correct the strabismus. After the surgery, her condition seemed to improve a bit. "She started to see a bit better, crawl, and sit, but I still understood she needed very sensitive and close attention."

Did she continue to cry during this period?

"She started to smile at a later age and slowly became happier. Everything happened for her with delays."

I Only Came to Hear That Her Heart Was Okay

At two years old, Mai went for a routine check-up with the cardiologist, accompanied by both her parents. After the examination, the doctor informed Hadas and Tamir, "Your daughter has Williams Syndrome, I'm almost certain of it."

How did he notice something that no one else did?

"The cardiologist observed that there was also a narrowing above the aortic valve, a type of narrowing typical for children with Williams. He essentially had already diagnosed her, but we needed a blood test to confirm his suspicion. Within a month, we received a positive answer."

Did you feel relieved to finally understand what was happening with Mai?

"I only went to hear that her heart was okay. I didn’t plan on becoming a mother of a child with special needs. I didn’t know what this syndrome was, and it sounded foreign to me. Tamir and I were shocked, and I couldn’t stop crying the whole way home. Another thing that worried us was that children with the syndrome are at risk when undergoing anesthesia. Mai had already undergone surgery under full anesthesia and was scheduled for another procedure. Thank God we found out before the second surgery."

Hadas and Tamir returned home, still in shock from the diagnosis, and the first thing Hadas did was call her parents. "I remember it like it were yesterday," she recounts. "I called my mom and just told her, as it is."

How did your mother react at that moment?

"She mainly tried to help me and started telling me about her brother. I was frightened. I tried to tell her that it’s not the same at all. My mother had a brother with special needs, who from the age of six until his death at 35, lived outside the house. I never met him, and I felt that in our home, we didn’t talk about him to protect us, but that wasn’t the right thing to do. I told my mother that I wouldn’t hide Mai, and surprisingly, I did the exact opposite."

After that call, Hadas went online to discover what Williams Syndrome is. "I read this horrific list of all the complications that could arise from the syndrome and couldn’t imagine it happening to my daughter. Afterwards, I got in touch with another mother of a child with Williams Syndrome, and we started talking. She wanted to add me to a WhatsApp group for parents of children with the syndrome, a group where you can consult with other parents, but I adamantly refused."

Why?

"I couldn’t imagine having that group constantly appear on my screen. Additionally, Arbel could already read, and I didn’t know how to explain to her why I was in that group."

You said you didn’t want to hide Mai, yet your initial reaction was to hide.

"Exactly. Because we operate on 'autopilot.' On the one hand, I didn’t want to hide, but on the other hand, I wanted first to digest and feel comfortable talking about it. For an entire year, I remained closed. Besides close friends and family, no one knew, and even with those who did – I didn’t want to discuss it. I was in a kind of mourning. Tamir, on the other hand, accepted Mai’s diagnosis quite easily. He didn’t delve into the subject like I did. He always said that Mai is still the same child and that we love her and everything will be fine."

During that same period, Tamir’s mother was diagnosed with leukemia. "It was a horrible year. Tamir was very busy, traveling from our home in the north to his mother at Tel HaShomer, and I was with the kids. At that time, I also didn’t know how to ask for help, which made me feel really alone in all of this."

After a year and a half, Tamir’s mother passed away from the illness. The family entered into deep mourning, and Hadas still struggled to adapt to the new reality, but she gathered the courage to join the WhatsApp group to consult on some bureaucratic issues. "I was very afraid to enter the group, to discover what the future holds, and see that my child resembles other children. It terrified me. Ultimately, I discovered amazing mothers in the group, who are now like family."

When I Let Go, Everything Collapsed

When Mai was two and a half, she entered a rehabilitation daycare, and at three, she moved to a special education kindergarten. At five, she transferred to a regular kindergarten with a personal aide and is now in a regular school with the help of an aide.

When did Mai leave the stage of being hidden?

"When Mai was in daycare, I still couldn't let go. I needed to be in complete control. I would drop her off in the morning and pick her up four hours later because I felt it wasn’t the place for her. When she moved to a special education kindergarten, I felt she was doing well, so I let go. Then everything collapsed. After three difficult years, I thought I could enjoy myself again, but instead – I fell into depression. I lost my appetite, lost weight, stopped sleeping, and forced myself to do things without any desire. Additionally, my mother-in-law passed away, so it was a really tough period. I was burnout despite managing to function."

What helped you out of this situation?

"I searched for ways to save myself. I tried everything, and slowly, I started to loosen up. It didn't happen overnight, and today I understand how many things I avoided. I was already in the WhatsApp group, but I was still very apprehensive. I got very close to the mothers but didn’t want to see the children. Only later did I realize that in this group, there is a whole world, so I started initiating things, organizing fun days, and today we're really like sisters."

Hadas decided to do something for herself and started studying family counseling through Michal Daliot's method. That's where her secrecy finally ended. "When I introduced myself, I said I'm a mother to a special needs child. For the first time, I said it out loud. It wasn't planned, but it sparked such heartwarming reactions. I was truly in awe. There's a saying that in a home with a secret – challenges and anxieties arise. And it's true. If you don’t talk about things, the home becomes a den. It brought me back to the way I grew up and to the decision that it wouldn’t happen to me. Yet, it happened to me. At that point, I began doing things differently. I became active in the group, we started organizing activities to raise awareness of the syndrome, and I even shared it on my personal social media page. It was really a coming into the light."

What was the trigger for this disclosure?

"I realized I paid a heavy price for this secrecy, I fell into depression. I understood I had to change something about how I operate, that perhaps I was acting incorrectly, and I wanted something different. In recent years, I have been working as a family counselor and coaching parents of children with special needs. I've met so many types of people. Some accept the syndrome as it is – this is what Hashem gave me, and there are parents who are closed, who are ashamed to reveal it, for various reasons. I raise my children openly so that they, as adults, will accept their environment openly. It's really for the common good. We have a mission to ensure that society receives the other with openness and compassion, and ultimately, there's no reason for us to hide."

What’s the best thing that happened since Mai was born?

"A lot of good happened. Really, my life changed. I worked in a managerial position in the past and at our business (Tamir is one of the owners of Dihon ATV), and from the moment Mai was born, I dedicated everything to my family. Additionally, I developed internally due to this, and today I turn that outward. I give lectures about our story and have a personal column where I help other families tell their story. I took the exposure issue one step further. It's truly my mission to help people not keep things bottled up."