The information on this website is provided by RSV Patient Network for awareness raising purposes only and should not take the place of talking with your doctor or healthcare professional. It should not be used for diagnosing or treating a health problem or disease. If you have any questions about your medical condition, talk to your doctor.
Stories of parents
Willemijn (mother of Guusje)
After a carefree pregnancy, delivery and a first maternity week everything changed quickly. Guusje, born on December 2nd 2015, was admitted to hospital with RSV when she was just two weeks old. Within 24 hours after admission she was transferred to the Intensive Care Unit where she had to be fully ventilated.
Willemijn (mother of Guusje): ‘Guusje seemed to have a cold at first. We were not surprised, because her brother also had a cold. When Guusje did not wake up for her feeding and also had a fever I started to worry. I took her to the hospital where she was admitted for observation. Not long after that, everything went wrong. Guusje was transferred to the Intensive Care Unit with a very serious case of RSV.
Guusje was on ventilation. The doctors expected her to regain strength after the peak of the infection was over. Within a couple of days she should be able to breathe again without the help of a ventilator. Unfortunately, things did not go as hoped. After a number of attempts to get her off the ventilator, it turned out that something else was going on as well. Guusje was born with congenital Malacia, narrow and weak airways. Because of the mucus in her lungs – caused by the RSV infection – it was impossible for her to breathe independently.
Guusje had to breathe through a tracheostomy tube (artificial opening in the neck which ensures direct access to the trachea) for over a year. After a very intensive year with many and long hospital admissions, major concerns and various surgeries, Guusje is now a healthy and happy girl and is developing well.
Marjolein shares her story about the RSV infection of her son Jan. Jan was hospitalised with severe RSV infection when he was only four weeks old. He had to stay in the intensive care unit on ventilation for eight days. Marjolein had heard of RSV, but she did not know that it could cause very serious illness in babies
“Our son was born on November 10th 2016. In his first weeks of life Jan was fine. He was drinking well and growing. Big sister Sarah (1,5 years old at the time) was very fond of her little brother. When Jan was four weeks old I had to wake him up for a feeding, which I found rather strange because he was usually very active during that time of the day. He was sleepy and did not drink much. That night he hardly drank anything at all and slept a lot. We decided to go to our GP. There was no cause for concern, yet. Jan still had wet nappies and did not have a fever. We were send home with the advice to come back in the morning if things changed for the worse.
He was drinking less and less so the GP referred us to our local hospital. They gave him oxygen and a feeding tube and he seemed to be recovering. However, on Saturday night his condition worsened and he had more difficulty breathing. I could not fall asleep that night and kept a close eye on him. The doctors gave him a different type of oxygen, but this did not help.”
He stopped breathing
“Because his condition worsened he needed a drip. When the doctor lifted him from the bed Jan stopped breathing. He turned very pale and looked like a rag doll. I thought I was going to lose him. He was put on the ventilator and while a team of doctors was treating him I felt powerless.”
ICU’s were filled with RSV patients
“We were told that Jan needed to be intubated and was going to be transferred by ambulance to the ICU of the nearest Children’s hospital. We were very lucky that there was an ICU bed available for Jan. The day before, some children had to be transported to hospitals in Germany or Belgium since all paediatric ICU’s in the Netherlands were occupied because of the RSV peak. Jan had to stay in ICU on ventilation for eight days. He was very ill and exhausted from the infection. We had heard of RSV before, but did not know it could cause serious illness in babies.”
“All-in all the hospitalisation of Jan was a very intensive period for us. We were not allowed to sleep at the hospital. I was pumping breast milk several times a day so I could still (tube) feed him. We were visiting several times a day and had to make sure his sister Sarah was also looked after. In the mean time I was still recovering from a C-section. We were very fortunate to have family and friends to help us out is these stressful times..
When Jan came off the ventilator, he was transferred to a local hospital where he had to learn to drink again. He was released from hospital five days before Christmas.”
How is Jan doing now?
The period after his release from hospital was quite stressful. We were left with all kinds of questions and were afraid that he was going to be ill again next winter. But Jan is a happy two year old now, the dust has settled and we are enjoying everyday family life with our two lovely children.”
María and Javier
‘Our little baby was born in August 2019, after only 26 weeks of gestation and a birth weight of 760 grams. Therefore, he developed severe bronchopulmonary dysplasia. He has spent 80 days on the intensive care unit and needed mechanical ventilation during the first 4 weeks. Fortunately, he recovered and was discharged from the hospital in November 2019.’
‘But only 20 days later, he started to experience shortness of breath and required readmission to the intensive care unit. Even though he had already received three doses of a monoclonal antibody, Palivizumab, he was diagnosed with RSV bronchiolitis. He has spent four days on the ICU and 16 more days in the ward. Apart from the respiratory disease, RSV aggravated two events: it caused pulmonar edication to control the pulmonary hypertension, and was operated to correct the retinopathy.’
‘This winter he has received five doses of Palivizumab to prevent RSV infection, and we have complied with the social distancing measures. Currently, our child has not been affected by RSV yet. Thankfully, the general development of our baby is going very well on all aspects.’