Fiene had a difficult start. Shortly after her birth, she was taken to the IC Neonatology of Erasmus MC Sophia in critical condition. In episode 6 of the TV show ‘Hands on the incubator’ we saw how she got there and how it went for the first seven weeks of her life. Fiene is now 8 months old. How is she now? Her mother Emma tells.
What was it like seeing the program again?
“It was confronting for me. I thought it was very beautiful and it was good for my processing, because I was not there when Fiene arrived at the hospital. It also provides a better understanding of our environment. When people hear that your child is in intensive care, they know it is serious. But what that looks like exactly is hard to imagine for others. Because of the broadcast, we have more to talk about and we can talk about it better with the people around us.’
Fiene rushed to Rotterdam. Did that surprise you?
‘Yes, that really surprised us. We were already in another hospital for the delivery, but we had not expected that we had to go to Rotterdam.
But it was not a carefree pregnancy. At the 20 week ultrasound it turned out that Fiene was a bit small. But the slowdown in growth was not yet a cause for concern. At the extra growth ultrasound at 28 weeks, it turned out to be a concern. From then on, the hospital was checked every week to see if she was still growing. But at 37 weeks, they couldn’t measure it properly. Then the thought was: let’s get her, then we can keep it under control.’
Fiene has a rare syndrome; a DNA abnormality known to only 21 people worldwide
Was it quickly clear what is going on with Fiene?
‘At first we thought that the stunted growth was due to a placenta problem. But once she was born, there was more to it. She did not start breathing on her own and was resuscitated for 13 minutes. So she’s had a really bad start.
We quickly had a DNA test done, and it shows that Fiene has a syndrome. An abnormality in her DNA that is only known to 21 people in the world. Some of these people have a lung problem. And so does Fiene – but whether that has to do with this syndrome or with her bad start, we don’t know yet. We suspect the latter, because progress is still being made.’
In the program, Fiene is 7 weeks – how did it go after that?
‘We were in high care for a while, where her sisters Nora and Sofie were finally allowed to hold her. That was very nice! Then we went to the medium care. I thought that was a really big step. From a place where she was continuously monitored with a lot of staff and a lot of data on the monitor, to just a pulse meter and less staff – I found that very difficult. Certainly because Fiene had many saturation dips (the oxygen level in the blood then drops quickly, ed.). I saw that happen, but no one came. And after fifteen minutes there was still no one. Then we decided that we wanted to stay with her 24/7. Fortunately, Fiene was later given a monitor, so that she could also be monitored more closely by the staff.’
‘When we were almost allowed to go to our own hospital in Delft, Fiene contracted the RS virus, which meant that she had to go to the ICU for another two weeks. And even when we were home for two weeks, we still had to go back to the hospital because she became ill. That vulnerability, that is typical. You are not afraid of a cough or a runny nose with the other children. Fiene really does require more care.’
How is Fiene doing now?
“She’ll be eight months in a few days. We are counting on her bad start with 3 months slack in her development. What she can do is roughly comparable to a 5 month old baby. She tries to turn around, is very cheerful and makes contact very clearly and easily. She even seems to be leading the way. That may be to compensate, because we found out that Fiene can hardly hear.
We tried to work with hearing aids, but that didn’t really work. Now she is on the list for implants, CIs (Cochlear Implant, ed.). That would be a very nice step.
Fiene also gets oxygen. It is only a very small amount, 0.1 or 0.2 litres. But if we stop it, it won’t work. So she really needs that support, it’s better for her. But it’s limiting, and that makes me sad. I can’t hold and carry her in the sling much less than I would like, she’s attached to a snake and that’s a lot of hassle.’
How are you?
‘It was and is an intense process. We were only busy with Fiene for weeks. The world news completely passed me by. If it went better with Fiene, then we would get tired, because then it was possible. Now things have changed: if Fiene is doing better, we are also doing better.
We try to make the best of it, and get the other girls involved too. They love Fiene, and Fiene’s reaction is so nice too. When Sofie and Nora hang above the playpen, Fiene is always happy.
But there is uncertainty about the future. Few people are familiar with this syndrome. We don’t really know how her development will go. It is known that the cognitive part starts more slowly, but that it eventually works out.’
I mainly focus on what goes well
‘I do block certain thoughts about the future. I don’t want to dwell on it too much, you can’t influence it anyway. It is a choice to focus mainly on what is there, what is going well. And that she is growing well now. And every now and then we take a moment to allow it. Because yes, sometimes it has to get out.’
“Looking back, I’m so grateful for all the care around us. Our safety net was fantastic. We never had to cook for ourselves in all that time, our parents, family and friends were so involved. I wouldn’t know what it would have been like if they hadn’t been there.
When I look at our children, I see so much resilience. They had to do without us here at home for three months, we were in the hospital and so she with family here. When we came back, we noticed that too. They were very tired, easily sad. We had to find our way again, but now there is peace again. Like it should be. That’s nice.’
Has your life changed a lot?
‘I’ve been a mother for 7 years, but since Fiene I feel more like a mother than Emma. I worry so much. I was always fond of spontaneous outings, also with the children – they just went along in the sling. And we loved to travel. Now we have to think more, arrange everything much more systematically. That has changed.
This afternoon I go to work for the first time for an hour, I am in front of a class at a primary school. In this way we also try to pick up normal life a bit again.’
How do you view the future?
‘First off of the oxygen, and of the probe, that she can do the basic things herself. That would be a nice step. And then doing everything she can hear makes a world of difference to her. I don’t really think any further than that. Step by step, towards the future.’