Alessandra and Guilherme
“I truly felt like this had only happened to me.”
Alessandra and her husband were thrilled to welcome their son into the world as they very much wanted a child. There was no way to predict how much their life was about to change after Guilherme’s birth.
Guilherme was delivered via c-section, and when the attending doctor screamed, it terrified them all. Guilherme was born with clubfoot—a condition unfamiliar to Alessandra and her husband, and, apparently, to the delivery doctor.
“She let out a scream, because not even she had any idea what it was,” remembers Alessandra.
“We were terrified. Clubfoot was something that we knew nothing about. We had no idea what it was or what it meant. We were sent home without exactly knowing what was wrong with our child. Even at the hospital, they didn’t clarify anything, they gave us no proper course of action.”
So, like many parents, she turned to the internet for answers. After significant research she gained a better understanding of the condition, and also found a private clinic advertising treatment. However, when she found out the cost she was devastated; each appointment was 750 reais (approximately $143 USD) and appointments were weekly for an untold number of months.
“Even with both me and my husband working we couldn’t afford it.”
Alessandra kept searching, fearing what her son’s life would be like if she was unable to find treatment. She eventually found Dr. Laura Ferreira, an orthopedic surgeon at the University of São Paulo, who had learned the Ponseti treatment method from Dr. Ponseti himself. When Guilherme was just 19 days-old, they attended their first appointment.
Dr. Ferreira explained clubfoot to Alessandra including the details and stages of treatment. She said that, most likely, treatment would be complete by the time Guilherme turned five, plus the clinic offered this care at no cost. Alessandra left the appointment feeling incredibly relieved, and, after just the first week of casting, already noticed a difference in Guilherme’s little foot.
But from there, things didn’t progress as she’d hoped. Guilherme, now nine-years-old, is still undergoing treatment, wearing the brace intermittently, and diligently doing physical therapy daily.
“We continue treatment today because his foot relapsed several times,” explains Alessandra.
Guilherme’s case is more complicated than most. As the doctors explained it to him, although the bones in his feet were corrected during the casting stage of treatment, his tendons are not following the same growth pace as his feet making it harder to maintain the correction, and more likely that his feet will relapse.
“Until he stops growing, we have to be watchful,” says Alessandra, “and pay attention to the way that he walks and how he steps. Until he’s finished growing, we can’t stop looking after his condition.”
Alessandra and her husband try to minimize any stigma Guilherme perceives, but it’s a constant struggle.
“We accept him the way he is. But society doesn’t. That’s our biggest fear,” she admits. “People carry a lot of prejudice. People find it strange, or ugly, or weird. People would ask me if I have been beating my son. They look at the boots and say, ‘wow, you got him those shoes to constrain his feet?’ I realize people react this way due to a lack of information, but it’s traumatic both for the kid and the family who has to hear to it.”
Even with the limitations of wearing a cast or a brace, Guilherme’s parents encouraged him to be active. They introduced him to skateboarding when he was two years old, then swimming, and biking, and eventually soccer.
Guilherme fell in love with soccer. And seeing him play is more than watching a game for Alessandra, it’s a victory, and a relief. Recently, he was even invited to play for a soccer school in Guarulhos.
“Our lives were one thing before clubfoot, and another after.”
Alessandra has made extreme personal sacrifices in order to provide care for Guilherme—helping him access medical care, supporting his ongoing and distinctive needs—while running a small business of her own.
When Alessandra went back to work at her salon just a month after giving birth, she brought Guilherme with her, both of his legs in casts. She made a special room for him so she could watch him while she worked.
“If I didn’t keep working, I would not have been able to provide him with the support he needed. Even though the treatment is provided by a publicly funded health service, he still needed special care at home. And I had no one to leave him with, so I worked with him by my side.”
She adjusted her work schedule to accommodate Guilherme’s weekly appointments at the clinic in São Paulo, a 45-minute drive when Alessandra could borrow a car—but usually an indirect trip involving three bus changes and a subway ride. To make it to their appointments on time, they would leave at 5:00 in the morning and wouldn’t return home until late afternoon.
And then there are the logistics of caring for a baby in a cast, or a brace, or with limited mobility. Bathing, dressing, donning footwear, are all more challenging.
Alessandra always imagined having three children, but now, she says she doesn’t have the courage. It’s a difficult and painful issue for her to reconcile, especially when Guilherme asks if he’ll ever have a little brother.
“We changed our routine completely, and our entire family structure,” she admits. “I thought I’d have a child and go back to work, that my son would be walking and running around. I never thought I’d have to make a full day available only for treatments.”
But Alessandra is grateful for her beautiful son.
“Today, when I look at our situation, I see that this is a small price to pay. I can only be thankful. My husband and I gave up everything to dedicate ourselves to Guilherme.”
Alessandra’s advice to other mothers who share this complex mix of emotions: “you have to be strong, don’t give up. No matter how difficult it might seem, do not give up. Because it’s worth it.”