2023-06-19 10:11:39
Josje Swinkels’ daughter, Lisa, is born much too early at 31 weeks. Despite the difficult start, she is getting better with the years. Until she gets a severe ear infection, from which she dies at the age of 5.
Daphne KeislairPhoto: Private image Josje SwinkelsJune 19, 2023, 10:11
“When our son was 2.5 years old, we again had a desire to have children. I got pregnant and everything went as it should. Until I was told by the gynecologist at 24 weeks that the baby’s growth was lagging behind. The ultrasounds in the following weeks also showed that my daughter was no longer growing. ‘Go get your things. You need to go to the hospital,’ the gynecologist said. That shocked me at the time, but I actually thought that in the hospital with complete bed rest it would be fine.
I lay in bed for weeks. Every day, even every hour, that the baby sat was taken away. But after four weeks in the hospital, I suddenly became very ill myself. I had HELLP syndrome, or preeclampsia. All alarm bells went off. Now it was no longer a question of whether the baby was going to make it, but whether I was going to make it.
Oxygen deficiency
I was deathly ill. My liver and kidney functions took a turn for the worse and I was transferred to the university hospital. Two days later, my baby was rushed and Lisa was born via C-section at just 31 weeks. She weighed only 790 grams. Even smaller than the doctors expected. Because there was no incubator space in the hospital, Lisa was transferred to another hospital. After three days I was a little better and I could be reunited with my daughter. When I saw her lying in the incubator, I immediately felt like a mother. I thought, ‘This is my child’.
Only at the neonatology department for sick and premature children did it become clear how much effect the premature birth had on Lisa’s life. Her organs, such as her brain and her intestinal tract, had not yet matured. The risk of infections or cerebral haemorrhages was enormous. Every day that went well was great. Initially it went very well. But after eight weeks she got an infection, a spicy one. We thought she wouldn’t make it, but she fought through it again. In those first three months, the doctors discovered that she had probably already suffered brain damage due to oxygen deprivation during pregnancy. But then they couldn’t tell us how that would affect her development.
Image Private image Josje Swinkels
Tube feeding
In the end, my daughter was in the hospital for 9.5 months. After that she also needed a lot of care at home. At night she had to be monitored and she was completely dependent on tube feeding. Because of all the trauma with the probe in her throat, she couldn’t and didn’t want to eat solid food. Every time I brought food to her mouth she would gag and spit. And there was another problem: Lisa couldn’t stand bright daylight either. When we went outside she had to sneeze continuously. She ducked and eventually it got so bad that she had to spit from this too. The doctors had no explanation for it. Day in and day out I was at home with a sick child. That was terrible for me, but for my son, who is now 3.5 years old, I found it even worse. I felt so guilty that he didn’t come out. He really lacked attention. Because my husband was away a lot, the care mostly fell on me. I tried to make it cozy at home, but it was really survival.
Finally, thanks to the pediatrician, I got extra help at home. He also arranged for Lisa to stay out once a month through aid agencies. And a spot became available at a daycare center for children with a physical and/or mental disability. Gradually we as a family got some breathing space again. It finally went a bit better with us and Lisa was also doing well.
It goes wrong
Unfortunately, that changed on her fifth birthday. She had problems with her ears. During the weekend it seemed to go a little better, but a few days later it was completely wrong. She couldn’t hold it in anymore and was admitted to the hospital. Then she deteriorated very quickly. When I saw her the next day, I knew, ‘This isn’t going to save them. It’s finished’. The world stood still.
That same evening she died of an ear infection, which was infected with a virus that affected her kidneys and liver. That went so fast. There was nothing resistant to this virus. One by one, her functions fell out at a killer pace. And then it stops.
The little things
Ever since she was born, I kept stacks of diaries to remember everything and write down my feelings. After she died, I turned it into a novel called “Not all little girls grow up.” People then asked me if I could give it a place. But it wasn’t like that. It remains a dividing line for life. There is a life before and a life after Lisa.
Lisa was an example to me. My daughter was so earthy and pure. At two years old it became clear that she was mentally disabled, but that was precisely why she was so pure. She lived in the moment. The little things in life made her happy, a blade of grass or a grain of sand; especially when she could go outside with custom glasses. Before she came, the house had to be cleaned every day, I had to put on my make-up every day. But through her I realized that being there for yourself, and for your fellow man, is much more important than outward appearances. Lisa’s ‘being’ has enriched me enormously.”
June 19, 2023
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