Mia’s story: Williams Syndrome ‘a blessing’ for one Red Sox family
The first hint that something was amiss came during an ultrasound scan. Seems minor, Danielle and Amiel Sawdaye were told, but go see a neo-natal cardiologist at Boston Children’s Hospital, check your baby’s heart.
The doctors at Children’s confirmed an abnormality but could not say for certain what it was, not with the baby still in the womb. They expected a mild heart defect, expected the Sawdayes’ second child to be small, to start her life in the neo-natal intensive-care unit (NICU).
No one mentioned to the Sawdayes that rare genetic condition, which, according to the Williams Syndrome Association (WSA), produces problems that include cardiovascular disease, developmental delays and learning disabilities.
Even if someone had raised the possibility of Williams, the Sawdayes, like most people, would not have known what it was. Would not have known that while their child would face unique challenges, she also could have – like most with Williams – strong verbal ability, a highly social personality and an affinity for music.
Many of the bowties I wear on MLB on FOX broadcasts represent well-known charities and organizations. Williams Syndrome, which affects one in 10,000 worldwide and an estimated 20,000 to 30,000 in the U.S., according to the WSA, is not well-known. But several months ago, Red Sox assistant general manager Brian O’Halloran brought it to my attention.
Someone O’Halloran knew quite well – Amiel Sawdaye, the Sox’s vice president of amateur and international scouting – had a daughter with Williams Syndrome.
On Saturday, I will wear the WSA tie to raise awareness for Williams Syndrome at the Red Sox-Mets game from Citi Field (4:05 p.m. ET, FOX SPORTS 1).
Mia Sawdaye was born on Jan. 16, 2013. As expected, she went right to the NICU.
“She didn’t look abnormal at all. There was no sense that she was any different,” Amiel recalls. “But as we were sitting in the NICU, they sent a geneticist down. And the geneticist said to us that she basically had aortic stenosis, a thickening of the aorta. That’s typically a tell-tale sign of a lot of kids with Williams Syndrome.”
The geneticist suggested that Mia get tested for the disorder. The Sawdayes agreed. And several days later, they received a call asking them to meet at the hospital with a specialist in cardiovascular genetics.
“We’re not stupid,” Amiel says. “We knew what we were going in for.”
The specialist broke the news. What scared the Sawdayes most is that they were not familiar with Williams Syndrome. They had an awareness of genetic disorders such as autism and Down Syndrome. But Williams? What was that? What did it mean for Mia’s development? What would her life expectancy be?
The Sawdayes spent the next few months researching the disorder. They hastily assembled a medical team to support Mia; their pediatrician had never treated a child with Williams and also needed to learn about the condition.
“That was the hardest part of the ride – early on,” Amiel says. “The initial diagnosis was very difficult. In some ways, you’re mourning the fact that you’re going to have a child with special needs and challenges. It’s a hard pill to swallow when you first get that news.”
The Williams spectrum, like the spectrum for other genetic disorders, features a wide range of possibilities. No studies exist on life expectancy, but some with Williams are alive and well in their 60s, according to the WSA.
Mia’s biggest issue, from the beginning, was Mia’s heart.
At three months, she underwent her first heart catheterization, a procedure used to treat cardiovascular conditions while the patient is under anesthesia. At nine months, she was scheduled to have another.
The plan went awry.
“For all intents and purposes, she had what I guess you would consider a heart attack,” Amiel says. “They had to do emergency surgery. She went in for a two-day stay; a catheterization is somewhat invasive, but not surgery. She needed open-heart surgery. She was there for three weeks.”
Two doctors at Boston Children’s Hospital played key roles in Mia’s treatment – her cardiologist, Rahul Rathod, and her surgeon, Christopher Baird. She came home in mid-September, just before the Red Sox began their improbable run to a World Series title.
Raquel Ferreira, the Red Sox’s vice-president of minor-league operations, and Erin Cox, the team’s executive assistant in baseball operations, occasionally would stay at the hospital with Mia to give Amiel and Danielle a break during those early months. Other team employees would come at night to watch games, keep the family company.
“It kept us going in a way,” Amiel says of the Sox’s march to the Series. “I hate to say it, but baseball helped us get through a lot of tough times.”
Mia is now 2½, and – in the words of the Red Sox’s Ferreira – “the sweetest girl you will ever meet.”
Some genetic disorders make it difficult for children to connect with others. Williams Syndrome is pretty much the opposite. According to the WSA, children with Williams tend to be social, friendly and endearing.
“It’s the cutest thing,” Ferreira says. “She’ll just look up at you and keep saying, ‘Hi, hi.’”
It happens at restaurants. It happens at Starbucks. It happens wherever the Sawdayes go.
“That’s just the way she is,” Amiel says. “Some people love it and eat it up. Some people are like, ‘All right, I just said hi to this kid. Tell this kid to shut up.’ She doesn’t get that part. She thinks you’re her friend. Then she’ll reach out to the person so that they can hold her or pick up.”
Which is not to say that Mia will grow up care-free.
Amiel says Mia is smaller than the typical 2½-year-old, less advanced in walking, talking and other aspects of her development. She will always be susceptible to what Amiel calls a “drastic heart event,” one that could happen at school, in a park, anywhere. The chances of such an event occurring will decrease as Mia and her heart get bigger and stronger, but they will not disappear.
As for Mia’s overall development, she seemingly has one advantage – her older sister, Lily, 4, is, in Amiel’s words, “very in-your-face, very verbal, very active . . . not the type to just sit around and play with a dollhouse.”
Lily will drag Mia across a room to play, take her outside to kick a soccer ball, talk to her. The Sawdayes believe that Lily’s assertiveness helps Mia progress more quickly. Their doctor says no research suggests such a link but does not dispute their premise.
The Sawdayes’ hope is that Mia will attend a typical school with a teacher’s aide but know she will not be a typical child, a typical teenager, a typical adult.
As children with Williams Syndrome grow, they often struggle with spatial relations, numbers and abstract reasoning, according to the WSA. As adults, most require supportive housing but often contribute to their communities as volunteers or paid employees, working at assisted living homes for senior citizens, hospitals and libraries, or as store greeters and veterinary aides.
I asked Amiel, “What would you like people to know about Williams?”
He took almost 30 seconds to respond.
It’s weird to say this, but it’s almost like a blessing. Kids with Williams Syndrome are so genuinely happy – I wouldn’t say every one of them is, but most of them are – they live life the way life should be lived. They see the world through a different lens.
Amiel Sawdaye, Mia's father
“It’s weird to say this, but it’s almost like a blessing,” he said. “Kids with Williams Syndrome are so genuinely happy – I wouldn’t say every one of them is, but most of them are – they live life the way life should be lived. They see the world through a different lens.
“If we all just took a little bit from those Williams Syndrome kids and applied it to our own lives, we probably all would live a much better, healthier life. They just don’t see the bad in anybody.
“That’s the part I’m kind of excited about with my daughter. I’m excited to see how she interacts with people when she gets older, talks to people, brightens up their days. I hope that we can all learn from that. It’s probably something we all can do a little bit better.”