When Pernilla Rönnholm from Gothenburg, Sweden, gave birth to her twins Kirsty and Freya, only one of the girls survived. Kirsty died 8 days old from multi-drug resistant bacteria. Listen to the family's story in an interview with the mother, Pernilla.
Please tell, how was your pregnancy with the twins?
– I felt pains quite often. I visited the hospital once because I was in a lot of pain, just before the water broke. My water broke during week 25. This was particularly difficult. I had to go by ambulance to the hospital and was admitted to the specialist delivery unit for three weeks. The doctors thought several times that I was going to give birth. When I was admitted, I was given intravenous antibiotics for two days.
Day 4 everything changed – the girls got sick
Freya and Kirsty were born in week 28 + 5 days. At birth they were both relatively healthy. They were put in incubators and received respiratory support through a device called CPAP.
What happened then?
– Day four everything changed. The hospital called us at night and said Kirsty was not doing well. When we came to the hospital the next morning, Freya had also become ill. The next few days we did not know much.
– I found myself in crisis, first with premature babies, then our little girls not feeling well.
The day before Kirsty died, we were told it was sepsis
– After Freya and Kirsty got sick, they, as well as everyone in the neonatal unit, were tested in order to detect an infection-outbreak and if so – what kind of bacteria it was. The tests done were bacterial cultures and therefore the results took several days. While waiting for the results of the tests, the girls were in incubators and they were treated with antibiotics.
– Meanwhile, Kirsty just got worse and worse. Day six we had an emergency baptism at the hospital for Kirsty.
Our world fell apart.
Sepsis and newborns
Newborns and especially premature babies are very susceptible and vulnerable to infections. When affected by sepsis, it is vital that they receive effective antibiotics very quickly in order to survive.
Every year, approximately four million newborns develop sepsis worldwide leading to 15% of all neonatal deaths, where the majority occur in low-income countries.
Further complicating matters is the rise of severe infections caused by microbes that have developed resistance to life-saving antibiotics.
The antibiotics did not work
– The day after Kirsty died, we were told her infection was caused by resistant Klebsiella. Both girls had the bacterium ESBL (Extended Spectrum Beta-Lactamase) – producing Klebsiella pneumoniae, which resulted in sepsis. The antibiotics did not help Kirsty. All of her organs except her brain had been knocked out. When Kirsty was eight days old the doctors turned off the ventilator. We said goodbye to her in the room we were staying in at the hospital.
Between days 1 and 4, when Freya and Kirsty were healthy, the unit and the family used the kangaroo, skin-to-skin, method, the girls were close to their parents as much as possible. After day 4 Pernilla could not hold them because the two little girls were sick and due to the risk of infection. The next time Pernilla was able to hold Kirsty was just before she died.
How was Kirsty’s last moment?
– It was very, very difficult. I sang Twinkle Little Star to her. It just came to me – this song. After I sang, it was not long before she died. Since that day, that song has a special meaning for our family. Later, I was told by a psychologist that the last sense to go when you die is your hearing – it felt like a comfort. Not only did she get to smell me when she was in my arms, she got to hear my voice before she passed away.
Pernilla suffered from PTSD
After Kirsty’s death, Pernilla suffered from Post-traumatic Stress Disorder (PTSD), from which it took several years to recover. Now, her family talks a lot about life and death. Pernilla says that daring to talk about death is important, and on the whole, society finds it difficult to talk about death when it comes to children.
How is life now, after Kirsty – how have you coped?
– It has been important since Kirsty died to talk about her. She is part of our family. On birthdays, New Year’s, Christmas, we celebrate her too. We usually make a toast to her. When it is Freya’s birthday, we also celebrate Kirsty. Of course, Freya is in focus, but we remember Kirsty. Talking about Kirsty is not sad only, it can be joyful too. Both Freya and her older sister miss Kirsty so we make sure to have a space to talk about their feelings and provide comfort.
– 6 September I was admitted, 29 September the girls were born, 7 October Kirsty died of sepsis caused by Klebsiella bacteria
– September and October every year are tough months. I remember more clearly what happened. The emotions are connected to those dates and that time of year.
Do you know how the girls were infected?
– The doctors said that the children had been infected by me when they were born.
Pernilla was invited to the inauguration of the renovation of the neonatal department
– Now the hospital has renovated the neonatal unit so that it is on its own floor and there are single rooms for all inpatients. I was invited to that inauguration – it was great to see.
Sepsis – a syndromic response to infection
- Sepsis is not an infection in itself, but is rather an extreme and dysfunctional bodily response to an infection. Previously it was also described as “blood poisoning”.
- Sepsis is a life-threatening condition and has a high mortality even in well-resourced health care structures.
- The medical consequences may include organ failure, septic shock and death. A variety of infections – bacterial, viral, parasitic and fungal – may lead to sepsis, including common conditions like pneumonia and urinary tract infections. Bacterial infection is commonly the root cause of the condition, and prompt treatment with effective antibiotics is then essential for survival.
- Sepsis disproportionately affects vulnerable populations: newborns, pregnant women and people living in low-resource settings.
- Significant regional disparities in sepsis incidence and mortality exist; Approximately 85.0% of sepsis cases and sepsis-related deaths occur in low- and middle-income countries.
- Almost half of the 49 million cases of sepsis each year occur among children, resulting in 2.9 million deaths.
Tell us a little about the The Miracle Premature Association that you started
– Miracle is a network of enthusiasts located throughout Sweden, from north to south. We work with neonatal- and women’s health care and lobby politicians. During election years, antibiotic resistance is never on the agenda. That is regrettable.
– We sometimes write opinion pieces on antibiotic resistance, but it is hard to raise interest in the issue. Politicians must take their responsibility, especially in view of Sweden’s coming presidency of the EU in 2023.
Making funeral clothes for premature babies
Pernilla tells us that when Kirsty died it was very difficult to find burial clothes as she weighed only 700 grams. This is why the Premature Association Miracle now has a network that sews funeral clothes for premature babies – made from donated wedding dresses. Starting 2023 the association will be part on a National Care Programme for Pallative Care – where you will be able to order funeral clothes for premature babies.
– I have also handed out Christmas presents at specialist delivery wards – they patients got small goodie bags with a lot of different things like diaries, pens. One woman wrote to me and thanked me – writing helped her cope with the time at the specialist delivery ward. Such feedback makes all the sweat and hard work worthwhile.
Invited by Sweden’s AMR Ambassador
– Sweden’s ambassador for antibiotic issues Malin Grape recently invited me to an event that AMR Patient Group are hosting. I have been asked if The Miracle Premature Born Association would like to become a member of their organization. I have answered yes!
Part of the problem or part of the solution?
Pernilla says that she usually asks: do you want to be part of the problem? Or do you want to be part of the solution? Pernilla is a problem solver, if she sees something that does not work – she wants to do something about it.
– I wish that more people who have gone through similar experiences or had a similar loss would share their stories with us. Only then can we have a better understanding of how antibiotic resistance is really affecting families.
– Antibiotic resistance is a pandemic that does not get enough attention and many people affected by antibiotic resistance are suffering in silence I want to change that. Antibiotic resistance can no longer be the silent pandemic.
Antibiotic resistance and sepsis
Infections caused by bacteria acquired in healthcare settings are often resistant to antibiotics and can rapidly lead to deteriorating clinical conditions. Antimicrobial resistance is a major factor determining if an infection is possible to treat, and a rapid evolution of sepsis can lead to septic shock. Sepsis patients with resistant pathogens have been found to have a higher risk of hospital mortality.
In a report from 2020, ReAct presented a survey which included 364 responses from physicians who treat neonates in 69 countries. Overall, 60% of respondents are very or even extremely worried about antimicrobial resistance as a threat to the effective treatment of neonatal sepsis. Of the respondents, 79% have seen an increasing trend of multi-drug resistant infections over the last five years, regardless of the region and income level of the health care facility where they work.
Sepsis is often treated with broad-spectrum antibiotics and therefore contributes substantially to the development and spread of antibiotic resistance. In turn, antibiotic resistance limits our ability to treat and manage sepsis.
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