Adir Was Born With Treacher Collins Syndrome: “I Googled It and My World Fell Apart”

Diana Bar had been eagerly awaiting the birth of her third child, Adir, a first son after two daughters, a joyful event for the small family that was about to grow. Her pregnancy, she says, had also gone by without any special problems. The tests were normal, she says. Nothing hinted at what would become clear in the first minutes after the birth, Treacher Collins syndrome. In an instant, everything changed. “I came to the delivery, Adir came out. My husband Doron immediately noticed that there was something strange about his ear,” Bar, 38, from Modi'in, who is married to Doron, mother of three, and works in a government office, says today. “I asked to turn him to the other side and we saw that the other ear was the same. I immediately screamed. The midwife told me she thought Adir had Treacher Collins syndrome. I took the phone, typed it into Google and my world fell apart. I saw a picture of a child who looked like he had been made for a horror movie. It was a catastrophe.”

Even today, when she is already the head of an association she founded for children with facial malformations, Diana Bar does not try to prettify the beginning. She does not tell a polished story of immediate acceptance. She does not skip over the shame, the anger, the shock or the rejection, and she does not hide the fact that for many long months she struggled to see the child she had given birth to beyond the diagnosis that changed her life. “It took me almost a year to come back to life,” she says with unusual candor. “In the first months, Doron and I were at the hospital two or three times a week, with doctors, at tests, in surgeries. I did not want to accept it and I repressed it so much. For a whole month he was hospitalized, while I cried my soul out. Doron was with him all the time, he did not leave him for a second. At the very first moment he collapsed on the floor for about ten minutes, then asked for him in his arms, accepted the situation, gave him a kiss and told him he would never leave him. And that was באמת the case. He slept in the NICU on the couch for a month so he would not miss a single feeding or a moment of contact with him.”

Bar, however, sank into a dark place. “I fought with the world and with God and with myself. I asked why. I had so many whys. Why me? Why him? What did I do wrong? What did he do wrong?” she recalls. “Doron had two businesses, everything collapsed. I stayed at home, he took care of Adir. He was the mother and the father, everything. All the burden of the girls was on him, I was shut up on the balcony, smoking cigarette after cigarette, not eating anything for almost a year, looking up at the sky. Like a little child who does not want to listen, covering her ears.

“Every night you go to sleep on some other planet, somewhere else, as if everything is fine, and then you wake up and say: fuck, it is real. To feel that emotion again and again, the fear, the anxiety that it really happened. It is here, it is present. This creature I did not ask for, who cries and has needs. I was shut up like that on the balcony for almost a year. I would see my daughters through the glass. They knew they were not allowed to come near me. There is no mother. There is a mother who is a ghost, and you must not come near. A mother who cries, who is sad, who looks up at the sky and asks God why and why and why.”

Even when she had to leave the house for tests and treatments, Bar tried to protect herself and Adir from the world’s gaze. “We would go around with him in hospitals, and he was always hidden in the stroller, so no one would see him, God forbid,” she says. “Every time he had to be taken out, Doron was the one who took him out.” One of the moments that stayed with her happened in a genetics clinic, during a routine wait. “We were waiting to go in, and there was another woman there with her daughter, who also had a genetic syndrome. Adir was asleep in the stroller. It was the first time I said to Doron, ‘Buy coffee, I’m waiting.’ Adir was asleep in the stroller.”

“Then Adir woke up and started crying. I gave him a pacifier, turned him around and said to myself: God, why now? The moment I picked him up, the mother was really shocked. It was a moment that broke me. I said: God, how am I going to deal with this? If she, a mother of a child who is also different, was so shocked.”

The turning point came when Adir was 11 months old. “After many long months of disconnection, he underwent a skull surgery, a very difficult operation, five hours. I was still very emotionally detached there, but I think somewhere there I started to see his character.” It was not an instant Hollywood-style love story. The bond did not come all at once. “I started to get to know him a little,” she says. “I connected with him emotionally. He wanted me even though I had not been there for him. He said ‘Mom,’ he wanted my hug. And slowly I started to connect with him.”

Alongside the emotional change, the surgery itself gave her, for the first time, a sense that perhaps Adir could have a different future. “The surgery improved his appearance a little, and I understood that maybe there was some hope. At first I wanted not to take him out of the house until age 18, to do the plastic surgeries for him, so he would look normal. By that stage I already understood that little by little we would do what we could, that he would look more normal, that we would do ears, that we would fight for him, that we would do everything possible. I understood that I needed to pick myself up.”

From that place, the idea of founding an association was born. “We always had a desire to give, something beyond, that we have something bigger to give to this world. We would sit and talk, saying what association will we open, what will we do beyond that, how will we make an impact.” At first, Bar still hesitated about whether it was justified. Treacher Collins is a rare syndrome. “There was a period when I said, well, for so few children, maybe it is not the right thing, maybe I should not,” she says. But about half a year ago, Bar and her husband attended a conference about microtia, a condition in which the outer ear does not fully develop during pregnancy, and sometimes a child is born without one ear or without both ears. “These are ordinary children without an ear or without two ears,” she says.

“It is much more common, and besides, Adir’s syndrome has other ‘cousin’ syndromes, like Goldenhar, Pierre Robin and others. Suddenly I understood that they also do not have an association. I took it in both hands and said: ‘This is mine.’ It is my role in the world. If they do not have an association, if there is no one to represent them and fight for them, I am here. Maybe a month later the association was already founded.”

The association is called “Panim Adirot.” It was founded on January 1, 2026, and is still in its early stages, but for Bar it is already filling a void that was deeply missing for her at the beginning: a community. “We are in the early stages, looking for the people, for the parents of children with microtia and with the syndromes,” she says. “We have not yet reached even a fraction of them. We opened two active WhatsApp groups, which help each other. This is the community that was missing for me, that I wanted to create, that I wanted to have. Thank God we succeeded in creating it. Since we are the first to represent the children and parents with microtia and facial malformations, we have now, right from the moment we were founded, asked for statistics on how many such children there are, and we still have not received answers.”

“We made contact with a super-specialized doctor from Los Angeles, asked her to come to a conference we want to hold, and she agreed. Not only did she agree, she bought her own ticket and covered all her stay. Everything was already set, and then the first war with Iran disrupted everything for us.”

One of the association’s main goals is to create collaborations with leading doctors and centers around the world. “There are not enough of those here,” she says. “If there is one doctor or two here who reconstruct earlobes, they do one or two such surgeries a year. Abroad, doctors do two such surgeries a day. We made contact with a super-specialist doctor from Los Angeles, Dr. Cheryl Levin, who for me is the ultimate authority on earlobe reconstruction,” she continues. “We asked her to come to the conference we want to hold, and she agreed. Not only did she agree, she bought her own ticket and arranged all her stay. We told her we do not have a shekel to fund her because we are without a budget, and she still agreed. Everything was already set, and then the first war with Iran disrupted everything. It is hugely frustrating.”

Behind Adir’s story is a rare, complex genetic syndrome that affects, already in the earliest stages of fetal development, the structure of the face, ears, hearing, jaw structure and sometimes breathing. “Treacher Collins syndrome is a congenital genetic syndrome,” explains Dr. Gil Nardini, a senior specialist in the plastic surgery department at Sheba. “We know the mutation that causes it. In some cases it is passed from generation to generation, but in about 60 percent of cases it is a new mutation that forms in the fetus. It is a relatively rare syndrome, about one in 50,000 births.”

Even when there is a family history, Dr. Nardini explains, the picture is not always clear right away. Sometimes in one of the parents, or even in a grandparent, very mild signs can appear that are not necessarily diagnosed as a syndrome. In the child, by contrast, the expression can be much more significant. “Sometimes you can see relatively mild changes that look like a family facial structure, but in the child the full picture of the syndrome can already appear.”

The damage begins very early in pregnancy, at the stage when the structures that will later develop into the face are formed, the eyes, ears, jaws, mouth and nose. That is why the syndrome first appears in these facial areas, in the eyes, the cheekbones, the ears and sometimes the jaw. “You can see the lower eyelid pulled downward,” he says. “Sometimes that pull is very significant. There can also be a coloboma of the lower eyelid, meaning a missing part or defect in the eyelid structure, and that can affect protection of the eye. Another characteristic is underdevelopment of the cheekbones, so the face looks flatter in that area.”

Ear and hearing problems are also part of the picture. Some children are born with auricles that are not fully developed, and sometimes with malformation or absence of the inner ear bones, which leads to conductive deafness that affects hearing ability. “In addition to conductive deafness, in most cases there is malformation and underdevelopment of the auricle on one or both sides,” says Dr. Nardini. “Sometimes there is also underdevelopment of the lower jaw, and sometimes a cleft palate, though that is rarer.”

Because of this combination of features, he says, the diagnosis in many cases is made already after birth, based on the characteristic clinical appearance of the face. “The syndrome has a very classic facial form. It is almost impossible to miss, unless you are not familiar with the syndrome.” But alongside the prominent external features, Dr. Nardini emphasizes that the syndrome does not cause brain damage or a decline in cognitive ability. That means the children understand the world around them very well, and also how the world responds to them. “They are as intelligent as you and me, they understand everything. They have a change in facial structure with a completely normal brain. That is where the tragedy lies,” he says.

Dr. Gil Nardini: “These are amazing children, who actually go through very big difficulties during growth, and those difficulties also pass to the parents. It is true there is no damage to intelligence, but for the parents it is very hard because of the response of the environment. Sometimes there is also difficulty in emotional development.”

For that reason, the challenge is not only medical. It is also emotional, social and family related. “These are amazing children, who actually go through very big difficulties during growth, and those difficulties also pass to the parents. It is true there is no damage to intelligence, but for the parents it is very hard because of the response of the environment. Sometimes there is also difficulty in emotional development.”

It should also be noted that Treacher Collins is part of a broader group of congenital conditions affecting the structure of the face and skull. One related syndrome is Goldenhar, in which facial malformations, underdevelopment of the ear and hearing problems can also appear. The difference, Dr. Nardini explains, is that in Goldenhar the damage usually appears on one side of the face, while in Treacher Collins the characteristics usually appear on both sides.

How is it treated? “At birth, the treatment must first of all be directed at preserving the functionality and health of the newborn,” explains Dr. Nardini. “If there is an eye injury, for example a situation in which the eye does not close properly, dryness of the cornea and damage to the cornea can occur. Sometimes it is necessary to do a partial closure of the eyelids, a procedure called tarsorrhaphy, to protect the eye.”

The airways also sometimes require immediate attention. In some children, underdevelopment of the lower jaw causes the tongue to be positioned further back, in a way that can interfere with breathing. “Sometimes the baby needs to be ventilated after birth, and in such cases a surgery can be done to advance the lower jaw forward in order to open the airway.”

Another area that requires early treatment is hearing. Since in some cases the ear structures do not develop properly, the children may suffer hearing loss from the beginning of life. “Often there is some hearing loss, and hearing aids need to be provided that transmit sound waves through the bone,” Dr. Nardini explains. “If you see pictures of children with Treacher Collins, you often see them with a band across the head. This is actually a hearing device anchored to the bone that transmits sound waves, because the middle ear and the hearing bones have not always developed properly.”

Only after it is ensured that the child is breathing properly, that the eyes are protected and that there is a response to the hearing problem, can one move on to the next stages, rehabilitation and reconstruction of the facial structure. Here too, Dr. Nardini stresses, this is not treatment by one doctor. “The correction of Treacher Collins is done in cooperation among several medical disciplines,” he says. “ENT, oral and maxillofacial surgery, and plastic surgeons are involved. Only the combination of all these forces can direct the right treatment.”

“The cheekbones can be reconstructed using implants printed on a 3D printer that simulate the appearance of a full cheekbone. Jaw surgeries are done by oral and maxillofacial surgeons, and reconstruction of the ear canal and ears is done jointly by plastic surgery and ENT.”

However, some surgeries are not performed at a very young age, even if parents would like to correct the appearance as early as possible. The reason is that the child is still growing, and a reconstruction done too early may change as the face grows. “In the end we want to reach a situation where the child’s appearance is as normal as possible,” says Dr. Nardini. “But ear and facial bone reconstructions are major surgeries, so they are usually done at older ages. If we do a cheekbone or ear reconstruction while the child is still growing, the result can be less predictable. In ear reconstruction, for example, cartilage taken from the child’s ribs is sometimes used. Therefore it is necessary to wait until there is enough ‘raw material’ to build the ear. And even then, usually both ears are not done together, but one ear after another.”

Alongside the major surgeries there are also temporary or complementary treatments, intended to improve the appearance of the face until the final reconstruction. “You can use autologous fat, for example take fat from the abdomen or thighs and inject it into the cheek area,” says Dr. Nardini. “These are intermediate procedures, which can add more volume to the cheek area and create a more balanced appearance.”

According to him, the most important message for parents is not to go through this path alone, but to come to a medical center with experience and a multidisciplinary team. “No single discipline and no single person can provide a complete solution,” he says. “You need a center with experience and a team that works together. Overall, the solutions we have today are very good and can lead to a good result and as normal an appearance as possible.”

Ultimately, he emphasizes, children with Treacher Collins can grow, learn, integrate and live full lives. “These people live full lives and achieve success. I know many children who have succeeded in school and built themselves a proper social network. It is not always simple, because it is harder for them with the environment, but with proper treatment, proper support and social backing, it is possible to get to excellent places. There are many associations that help greatly with emotional and social support. The children feel much more comfortable with children who are like them.”

Today, almost four years after that birth, Diana Bar no longer looks at Adir through the Google images that frightened her that day. “Adiri today is an incredibly sweet child. He is smart, he is social, he is mischievous, he is incredibly funny. And באמת I cannot understand where it comes from. He is an amazing dancer, if you see on Instagram, he goes wild for trance music. He has children who see beyond his outer shell, and fall in love with him in an instant. באמת, that is one of the things, how do you say it, it is his luck, that he is a very captivating child.

“I give lectures about my story and Adir’s,” she continues. “My lecture is called ‘This Is Not What I Ordered.’ Thank God, I get very good feedback and encouragement. I feel that through my lectures I am of course also introducing the association and promoting it, but mainly I talk a lot about accepting the different, and give a few tools for passing this on to the children of the parents I speak to.”