Sterre Mos from Bodegraven was born with only a right heart half and has undergone several heart surgeries. She often goes to the Wilhelmina Children’s Hospital (WKZ) for check-ups. “That’s my second home,” she says. “Always cozy there, with those bright colors. Not a white hospital or anything.”
When Esther van Wijk was pregnant with Sterre, twenty-week ultrasounds were not yet performed. She and her husband Jeroen thought it would be nice to have such a picture anyway. But the pre-echo revealed that the baby had a unicameral heart , as well as a transposition of the great vessels. Esther was referred to the WKZ. “There I gave birth a few months later,” she recounts. “Sterre was not yet born, or hups, she was already gone. Half an hour later she came back with wires, bells and whistles everywhere. And after a week, she had her first surgery.”
The only surgery Sterre remembers anything about was the heart catheterization when she was 10. A larger stent was put in her heart at the WKZ. A stent is a metal tube placed in a blood vessel through the groin, with the purpose of keeping it open and avoiding surgery. She didn’t mind that it had to be done and was confident that it would go well. And it did go well. After the treatment, Sterre had to stay in the hospital for a few days. That was a great opportunity to prepare the talk about her surgery together with the doctors. “I actually try to do a talk like this every year,” she says. “At least then the whole class knows what I have.”
At the time, Sterre’s mother Esther met fellow sufferers after giving birth. From these fellow sufferers she heard how often family life was dominated by their child’s heart defect. “So we’re not going to do that,” she told her husband. Sterre has two younger sisters, Fee and Elf, and is growing up like any other child. She plays sports, dances, and skis down the mountain during winter sports. “I don’t dwell on her heart problem on a daily basis,” Esther says. “The other day the battery on her bike was dead. I wanted to say, ‘Then go to school on my bike.’ But then I thought, ‘Oh, no. Ten kilometers to Woerden is pretty far for Sterre.'”
Life expectancy with such a serious heart defect is usually limited. So when Sterre used to toil away at her arithmetic, Esther sometimes thought, “Gut child, go do something more fun. She has since come back to that. Esther: “Maybe Sterre will be fifty, or even older. Who knows.” When she looks back at photos from the past, all she sees is Sterre, not the technology or the equipment. “A little doll,” she says. “My husband and I also think back to those days fondly. I would do it all over again in a heartbeat.”
When she was 12, Sterre had one big wish: to go on a school trip in the spring, and in the Efteling python. Esther thought that was a bridge too far; she was afraid the blood flow would stagnate. The doctors agreed with her: no unnecessary risks. At the end of November – Sinterklaas was in the country – Sterre nevertheless asked doctor Krings of the WKZ. He wanted to see videos of the roller coaster and together they looked on YouTube. He said, “That’s super! You should do that!” He reassured Esther, “That blood will definitely flow.” The next day, Sterre and her sisters found a ticket to the Efteling in their shoe. Esther: “I wanted to see with my own eyes if Sterre could handle it. Then they went into the python six more times that day without me.”
Sterre likes to shop with friends in Utrecht. Buying nice clothes and going to Douglas for make up. The other day they had to climb four flights of stairs for a store. While Sterre was huffing and puffing over the banister, she said to her friends, “You guys go ahead and try on some clothes. But of course they didn’t. Sterre has many friends, she is very social. Yet she has also been bullied at times. “Girls at school called me lazy because I have an electric bicycle. But when I gave my talk, those girls started crying. I thought that was a nice reaction.”
Later, when she is grown, Sterre will receive a heart transplant. Initially, it was expected to be around the age of eighteen. But the heart is functioning so well that the transplant can probably be postponed.
