Back to Nijmegen

Last Monday, we had a follow-up interview at the hospital in Nijmegen with the doctor who helped care for David and was our contact doctor during our stay there. The nurse who looked after David the night he died was also there. 

It was quite confronting to come back there because it was the first time since we left there fairly abruptly. But we were both itching to go back to Nijmegen again so the timing was good. During the interview, we were also able to ask questions. For example, one of the things we would like to know is whether what David had is hereditary or 'coincidence' that it occurs twice in 1 family. Unfortunately, that's hard to say.

A number of tests were done at the time, but they only showed that there might be a lesion in the X gene, making it more common in men than in women. Because women have XX genes and men XY, a possible damage in one of the X genes will be compensated by the other X in the woman. So in men, there is no such backup system and a defect in the X gene can lead more quickly to, say, a hole in the diaphragm. So there remains ambiguity about whether it can be repeated in any subsequent pregnancy. There is no reason to do "special" things like extra tests in hospital in a next pregnancy, because Marieke otherwise had a very good/fine pregnancy. However, there is an increased risk of recurrence, because it is very coincidental that something so rare happens twice in one family. So we will have an extra extensive 20-week ultrasound in the hospital to take a good look at everything. In addition, we will of course have to give birth in hospital.

After the talk, we walked to the room where David had lain and died his entire life. A different baby was now lying there and that was a very strange sensation. No ECMO but all the other equipment David was also lying on at the time. Marieke found it very confrontational to be in the same room again and then to see that bed with two tiny baby legs above it. It was unreal to be standing there again.

Afterwards, we also had a conversation with a social worker. We had also spoken to her during our stay in Nijmegen, but didn't feel much need for it then. Now we did, needing to know whether we are "doing it right" in this process and whether the things we encounter are "normal". We didn't have so many expectations but it was a very pleasant conversation that helped us a lot together.

Since Christmas and New Year's Eve, more emotions have surfaced in both of us. More than we actually expected during, for example, "closing" an old year and moving on to a new one. On so many levels, you look back with a different feeling, different from other years.

Marieke has experienced a bit of a "setback" since Christmas. A lot of emotions that suddenly surfaced again and the confrontation with certain things like cleaning up things at home that belonged to David. Maybe also because she wasn't at work yet, which in itself was good because she definitely needed that rest. But that might also make it easier for her to confront her emotions.

I went back to work fairly quickly after David's death because I felt the need to and did not feel like "waiting at home to process". Not that I wanted to escape into work to avoid that confrontation, but more because I don't think I could stand just being at home. And I also felt like doing something again, unlike Marieke who really didn't have the space for it at that time.

Since the end of October, I started working half-days and full time again a few weeks before Christmas. I noticed that didn't go very well. Difficulty concentrating and also having trouble keeping an overview outside work. The week off between Christmas and New Year's Eve was a welcome rest, but then you notice that more has changed than expected. Whereas normally we really enjoy the Christmas period, this time we really had to do our best to make it cosy for ourselves at home, but most of all we rested a lot together.

After New Year's Eve, I went back to work full-time and it's going a bit better than before, but I notice that towards the end of the week I just don't really feel like I'm functioning optimally. A number of things are no longer going so naturally and I can handle less than I am used to. Fortunately, at work there is an understanding and I am given space when I need it. I just have to discover what I need.

There is simply no manual for this process on how to go about it and how much time you spend for it. It does make a difference that we know and accept from each other that apart from processing together, we both have different processes. But discovering how best to handle your own process and finding a healthy balance between things that "have to", rest and emotions is quite difficult. It does make our relationship work a little harder at times because everything doesn't come as naturally as it did before, but we have it really good.

Silently, we are also looking to the future again. Would we want/be able to get pregnant again. How would that go. Could it go wrong again. What if it goes wrong. All kinds of questions and no answers. We do know that we would love to have more children and believe that God will give them. Because He is with us, we are not afraid of the future. We just find it exciting...