WAEC kindergartener living with rare Treacher Collins Syndrome

“Some of them.”

That, said Vanessa VanSile of Warren, was her son Lihem Hogg’s answer to her question, after his first day of school, as to whether the other kids were nice to him.

“I had to go in the bathroom,” said VanSile. “I just couldn’t make it through that conversation.” VanSile said that, like any mother of a new kindergartener, she spends a lot of time worrying about her son’s social development.

VanSile, however, has one specific concern that only about one in every 50,000 sets of parents shares.

Lihem has no cheekbones.

Lihem does not have ears as most of us would recognize them.

Lihem has Treacher Collins Syndrome (TCS).

Treacher Collins has been documented since the year 1900. The genetic condition causes the growth of facial bones to be disrupted during fetal development. Graded from “mild” to “severe,” TCS can be detected using amniocentesis, sometimes. But it’s only ever tested for if there’s a concern about passing the gene for TCS on to one’s child. Unfortunately, many cases of TCS are “new,” meaning that the occur in the fetuses of parents who don’t carry the TCS gene themselves.

That was the case for Vanessa, who said that doctors originally noticed on ultrasounds that Lihem had a receded chin, and appeared small for his developmental age. “You know how you get those 3D ultrasound pictures now,” said VanSile, “and the faces are like these fat, baby faces? Lihem’s wasn’t like that. He looked very skeletal” on his ultrasound pictures, said VanSile. That was because he was not growing cheekbones or ears. “I asked, ‘where are his ears’,” during the weekly ultrasounds and nonstress tests that became a regular part of her pregnancy after doctors noticed that receded chin. Doctors wanted to make sure that Lihem was still swallowing the amniotic fluid that feeds a fetus until it is born. “They just said it’s probably just shadows,” said VanSile. They didn’t seem to think that there was anything to worry about.

VanSile said that she was induced three and a half weeks prior to Lihem’s due date, because she was carrying a lot more fluid than doctors would have expected. But even when the doctors delivered her son and immediately had to incubate him, VanSile said, she wasn’t concerned. “He was three and a half weeks early,” VanSile explained. She was prepared for the fact that he may be in the NICU. But, she said, when the doctor approached her, as they were beginning her postpartum recovery and also reviving Lihem after he took his first breath and cried, it was not to hand her her baby but to tell her that “he doesn’t look normal.”

Even as doctors explained Lihem’s craniofacial differences to VanSile, she said, she wasn’t scared or upset. She just wanted to see her son. “I don’t think I was really understanding what he was saying. I knew he had a receded chin. I knew he was going to look different.” But what the doctor was describing to her, said VanSile, was beyond what she was expecting. The doctor told her that Lihem didn’t have any cheekbones or any ears, and that his eyes were asymmetrically situated on his face. VanSile still refused to get upset. “‘It’s okay to cry’,” she said a nurse told her before she was taken from the delivery room. “I told her ‘I’m not going to cry.’ Then she left and I just bawled.”

“I don’t know. I have a lot of pride,” explained VanSile, “so I don’t want people to see me hurt and upset and like I’m affected by it. All I wanted to do was see him,” she said, at that point. Finally, said VanSile, three hours after he was born, she was wheeled down to the NICU to get her first look at her son.

“He was just the cutest thing ever,” said VanSile. The baby boy she found herself drinking in the sight of “was not at all what they’d described to me.” For the three weeks that Lihem spent in the NICU, VanSile said, she and Lihem’s father, Sean Hogg, had to demonstrate that they could care for Lihem. The culmination of their tests, she said, was showing a nurse that she could change Lihem’s tracheostomy tube. He’d had to be trached at birth, as doctors were afraid that due to his craniofacial differences he wouldn’t be able to breathe consistently on his own.

VanSile said that being a first time mom to a child with so many extra medical needs was difficult, of course, but that she never understood when people told her that she was “so strong,” or that they “could never deal with” what she does.

“You have no idea what you’re capable of until you’re tested,” said VanSile of that logic. She feels that the tendency of people to think they could never face the challenges that others do is incorrect. “I didn’t have the luxury to be scared. I didn’t have time to be overwhelmed,” she said. Things like Lihem coughing so hard that his tracheostomy tube fell out, or learning to care for an infant who was hooked to a feeding tube and a personal humidifier, were just unique parts of her new mom experience.

Now, at age five, VanSile said that she’s gotten used to having to face unusual challenges with Lihem. The hardest, she said, has been having to see him go through the pain of multiple surgeries, and knowing that more are in his future. But what concerns her most now, with Lihem starting kindergarten this past fall, is the emotional pain that comes with having such striking facial differences.

VanSile sent a letter home to all of her son’s classmates, introducing him to them and the tracheostomy tube and hearing aids that keep him functioning well. “It’s about the parents,” said VanSile, who said she understands that children are going to be curious, but wants parents to know that it’s up to them to teach their children empathy and kindness. VanSile said that what’s hard is when she’s out with Lihem and she sees people pointing, staring, or whispering about him. Curiosity is natural, she said. “But you’re never going to know unless you ask questions.”

VanSile encourages parents and children to ask questions, both to her and Lihem. She said that part of her strategy for getting him prepared for kindergarten was having him take on age-appropriate responsibilities for his own care, such as putting his own tracheostomy tube back in when it falls out, and learning how to talk about what his hearing aids are, and how they help him. “Everything that he can do for himself,” she said, “I like to have him do. It gives him independence. It gives him a sense of ‘okay, I can handle this,’ but it also gives him more information to answer those questions with,” she said.

So far, Lihem said he’s not necessarily having a bad time in Kindergarten. He loves gym and math, and he has a best friend named Aiden, for the moment. But he said that one thing he does wish is that his classmates would ask him questions, instead of asking the teacher. And when they are mean – staring or laughing – he said he doesn’t like it because they’re being “bucket dippers.”

Bucket dippers is a term that WAEC uses to describe students who make choices that are not helpful or kind, and it contrasts with the idea of being a “bucket filler” – someone who goes out of their way to help others and be friendly.

VanSile said that she recently took Lihem to see the move Wonder. The film is about August Pullman, a child with TCS, and is based on a children’s novel about Pullman that gives audiences a look into the experience of living with TCS for kids. “It’s all about having empathy and being nice. Thinking about how you’re wording things, thinking about how you’re asking questions,” said VanSile, who added that other than Wonder, it’s uncommon for Lihem to see anyone who looks like him.

Once a year, she said, she takes Lihem to a craniofacial retreat that gives him an opportunity to talk with peers, and her an opportunity to both hear stories from kids and adults with TCS, giving her an opportunity to understand Lihem’s experience, and also an opportunity to network with other parents of children with TCS. That fellowship, she said, is “crucial.” She said that the first person Lihem saw at last year’s retreat – their first – was a girl Lihem’s age named Cassidy.

“‘Mom, she looks like me,’ he said.” VanSile said that one moment was so meaningful to her because she realized that he’d lived four years never entirely sure that there was anyone out there who could truly empathize with him. “It was huge,” she said with a tear in her eye.

VanSile said that if she could tell the whole world the most important thing to know about Lihem, it’s that he has taught her the potential of her own resilience. “This kid is phenomenal,” she said. While he’s “great in a group,” she said she enjoys jut watching him playing and flourishing on his own. “For everything he’s been through, he’ll notice me watching him and he’ll look up and he has this huge smile on his face.” That, said VanSile, is her model for strength.

And, said VanSile, she’s grateful. While TCS is a rare difference to encounter, especially without her or Sean carrying the gene themselves, and even with Lihem getting what doctors classified as a “moderate” case, “it could have been so much worse. We have so much to be thankful for.”