Patient story: Rosa

patient stories

When Rosa was 6 weeks old, an apparently simple respiratory infection turned out to be a multidrug-resistant Klebsiella pneumoniae infection. This resulted into three long years of surgical interventions, rehabilitation and uncertainty about her future. 

Rosa EAAD patient story

In 2019, Aart and Lina, both Dutch nationals and medical doctors, had their third daughter, Rosa. As doctors working in a field hospital abroad, they were no strangers from medical challenges. Nevertheless, they could not have imagined the long and difficult road ahead of them when Rosa, then 6 weeks old, got a viral respiratory infection which got complicated with bacterial pneumonia. Despite the initial treatment of the bacterial pneumonia with antibiotics, her condition worsened and the real culprit was later discovered - a multidrug-resistant Klebsiella pneumoniae

“For me it was a real concern”, Lina recalls. “We were completely shocked because doctors had been treating her for nearly a week thinking that the problem was being solved. However, in reality, the treatment was not effective at all.”

The discovery of the multidrug-resistant Klebsiella pneumoniae transformed the situation from a stressful one, into a nightmare. Reflecting on it, Aart remembers “you’re thinking that, maybe, the multidrug-resistant bacterium may spread to other organs- the heart, joints, even the brain. At that moment, it is no longer just a pneumonia case, but it becomes a much bigger problem.”

And the infection did spread to Rosa’s hip. Aart remembers his thoughts when he received the news: “Learning that the multidrug-resistant infection affected Rosa’s hip was a big worry to me as well. Will she ever be able to grow? Will she be able to walk? Or will she have severe pain? Will she need a new hip joint? All those things went through my head.”

And his worries were not unfounded. The infection required four surgical interventions and after several unsuccessful treatments with various antibiotics, she was administered a combination of meropenem and an older antibiotic, amikacin, as last-resort option. While amikacin treated the infection, it also came with its own additional risks. “Amikacin could be very dangerous for Rosa’s young kidneys,” says Lina, remembering the intense worry she felt. “We kept asking ourselves whether she would handle it.” 

Regardless of the challenges, Rosa fought hard, despite being just a few weeks old, and ultimately the infection was cured. But the multidrug-resistant Klebsiella pneumoniae had already left marks on her young body. Six months later, during a check-up, her parents discovered that her hip has been dislocated because of the infection. She needed surgery, followed by 12 weeks of cast that proved ineffective in correcting her hip. During the next years, Rosa went through multiple complex surgical interventions that were not all successful, prolonging her suffering and that of the entire family, before her hip was finally stabilised. 

“It wasn’t just a two-months-in-a-hospital story”, Lina explains. “These were three long years of surgical interventions, rehabilitation and uncertainty about her future.” 

Rosa’s ordeal is a stark reminder of the devastating consequences of antimicrobial resistance (AMR). What started as an apparent simple infection, transformed into a major struggle with long-term consequences. Even now Rosa is not entirely cured, and she might need further surgical interventions, possibly including a growth-restrictive surgery for her healthy leg as her growth and mobility are still closely monitored. 

The journey was not only a physical challenge for Rosa, but also an emotional struggle for the entire family. Rosa’s two older sisters were only four and two years old when their little sister got sick. “The other children were also very young, but they realised that something very bad was happening. They were very stressed and affected by my absence, as I had to spend time in the hospital with Rosa”, Lina remembers. 

Multidrug-resistant infections, like Rosa’s, are a grim reminder that, when they resist to multiple antibiotics, bacteria become very difficult to defeat, and the consequences can be long-lasting. “It was not a simple infection, which can be treated with penicillin, then you get better and get back to normal life,” says Lina. “For Rosa, there were four surgical interventions after the infection was treated, and after that three more to treat her hip displacement. What we thought to be a simple infection transformed into years of treatment and uncertainties.”

Now, five years later, Rosa runs and plays with other children of her age. Her parents are relieved, but the AMR scars remain- both physically and mentally. 

Reflecting on their experience as both doctors and parents, Lina and Aart underline the importance of prudent use of antibiotics for containing AMR. “Doctors do need to take their time to discuss with their patients,” says Aart. “Patients do not always need antibiotics. It is easy to prescribe antibiotics, especially when this is what the patient expects, but we, as doctors, have the responsibility to discuss with patients and educate them. If antibiotics are not needed, then they should not be prescribed. This is a simple but essential step in preventing further increase of multidrug-resistant bacteria and spare other families from an ordeal like ours”. 

 

To protect the identity of the young patient, all names have been changed.