Mieke Verberkt (32) was born three months premature. “I was rushed because it was too dangerous for my mother. I was born blue, got a collapsed lung and immediately had to be put on a ventilator. The chance that I would survive was only 10 percent.”
Stuffy
Mieke has been struggling with lung complaints all her life, especially when she was younger. “I was easily short of breath, often tired and couldn’t keep up with my classmates during gym class.” A mild cold often caused her to call in sick. “Then I was so short of breath that I couldn’t even climb the stairs anymore. I was also sometimes admitted to hospital because I couldn’t get my shortness of breath under control.”
The pediatricians and pulmonologists thought that Mieke suffered from asthma, but the puffers she was given for this hardly helped. “I always felt it was my fault.”
Until a few years ago she came into contact with other premature babies. They told her about the condition BPD, bronchopulmonary dysplasia, a lung disease that can develop if you are born prematurely. Mieke was referred to the pulmonary department of the Erasmus Medical Center, where she was diagnosed with BPD after 31 years of ailments.
According to Lieke Kamphuis, pulmonologist at Erasmus MC, Mieke is far from alone. In her center of expertise for adults with a congenital lung defect, she sees patients every day with the lungs of a heavy smoker, even though they have never smoked. The cause: premature birth.
“In the Netherlands, two thousand babies are born alive every year at a gestational age of less than 32 weeks. Of these, 75 percent have lung damage. I estimate that 60,000 adult Dutch people unnoticed have a lung disorder caused by their premature birth, while we in our center of expertise for adults with a congenital lung disease treat only 400 patients,” says Kamphuis.
Wrong diagnosis
That is why the pulmonologist is sounding the alarm. “Most of the patients do not realize that they have lung damage. They accept that they are more often stuffy and have a cold, cannot exercise for a whole game and have to take a nap during the day.”
And if patients do come forward, doctors often make the wrong diagnosis, according to Kamphuis. “COPD if people smoked and asthma if they didn’t. They get the wrong treatment.”
That is a shame, because according to Kamphuis, much can be done about lung damage due to premature birth. “Sometimes I see lungs that are so damaged that I would normally send them for a lung transplant, but with the right treatment we can make three out of four patients better.”
Therapy
This treatment consists of a combination therapy of two types of bronchodilators, medicines that help relax the muscles of the airways. Targeted treatment is also possible for the scars in the lungs. “The lung function and condition improve significantly after the treatment and the complaints decrease.” Treatment fails in one in four patients. “These are patients who have relatively less lung damage and therefore fewer complaints.”
Big difference
Mieke was also treated with a bronchodilator. “I noticed a difference right from the first treatment. I can breathe better, I am less tired and no longer suddenly short of breath. I am very happy that after 31 years the right cause has finally been found.”
Kamphuis sees that many patients, like Mieke, have a long way to go before they receive the correct diagnosis. She thinks doctors should check whether a patient with lung complaints was born prematurely.
According to Leon van den Toorn, chairman of the Dutch Association of Physicians for Pulmonary Diseases and Tuberculosis, this still happens too little in practice. “In many cases, that link is not made. That has to change. General practitioners and pulmonologists should be aware of this and should actively ask about it.”
According to the Dutch College of General Practitioners, GPs do not routinely ask adults with lung complaints whether they were born prematurely. “If adults did not have these respiratory complaints before, it makes less sense to ask all those patients about it,” says the spokesperson. “That history is often known when, as adults, they again develop complaints that they also had as a premature child.”
Prevention
Pulmonologist Kamphuis advocates a standard CT scan for every premature baby at the age of 18. “Then you think from a prevention point of view: how are things going and how do you prevent people from deteriorating and getting complaints?”
Mieke hopes that other premature babies will receive the right treatment sooner. “I hope there will be more awareness of this condition, so that people realize that their complaints are not normal and can be addressed.”
2023-07-13 04:27:51
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