Hi all! Hope you are doing alright and your week went well. We had our genetic testing consultation on Tuesday and it went pretty well. I was preparing myself for an argument as we were previously denied testing by my previous consultant and was told by a genetic counsellor that it would be unlikely to be offered after "only two losses". But I was pleasantly surprised by the whole experience. First off Rob was acknowledged straight away by the genetic consultant and felt included in the appointment, after all, our babies are half his genetic make up and that's what we wanted to discuss. The consultant was really lovely and asked us questions about both of our families and drew up our respective family trees, she came to the conclusion that it's unlikely that Passengers fate was genetically influenced although she did tell us there was a slightly higher prevalence of anencephaly in Scottish and Irish families. I come from Scottish and Irish blood and Rob has The Irish running through his veins, I found that really interesting and it was pretty much the only thing we were told in the appointment that I didn't know beforehand. After running through our family trees and discussing how we were coping with the two losses (I mentioned being prescribed sertraline and explained the struggles we have had after losing two) she offered us Karyotyping. Karyotyping looks at the chromosomes which are made up of our DNA, the structures are examined to see if each of the 23 chromosomes are the right size and the right number. There is a possibility that either one of our chromosomes has undergone what is called a "balanced translocation" where a chunk of DNA from one chromosome has been swapped with another chunk from another chromosome. In a parents case it doesn't show a disorder or phenotype but it is possible to pass it onto offspring which can cause duplications or deletions of genetic sequence ultimately causing miscarriage, genetic disorders or defects that are incompatible with life. If this is the case Bean and Passenger could be linked. Then again our results could (and hopefully will) come back completely normal meaning that Beans fate was awful bad luck and Passenger's was either again horrible luck or a result from environmental factors, namely lack in folic acid intake on my part (even though I took the daily amount recommended). I did ask about getting biochemical/genetic testing for the MTHFR gene which metabolises folic acid into its natural form but she said that if I had something wrong with that gene I would be showing folic acid deficiencies. She explained the 5mg folic acid tablets I am now taking are used like a vitamin in which the body only takes what it needs and anything over that amount is expelled in the urine. We will find out our Karyotyping results in 8-9weeks which is standard turn around time for that kind of test, so I will keep you posted.
I mentioned last week that I wanted to get Rob's point of view on Bean and our miscarriage. It's been awkward to get him to talk but I finally cornered him while I was cutting his hair last night. I recorded the conversation which lasted about 40 minutes and I want to just summarise what his answers to my questions were rather than write out the whole conversation, reading a script wouldn't be very interesting!
I found it hard to think of specific questions, I really I wanted him to reel off his experience from start to finish just as I am doing with this blog. But that's just not how Rob works, he has admitted before that he doesn't show his feelings easily, like a lot of men I think. So him opening up was a little difficult. Even before I started my first question he immediately said "please don't say 'how did you feel..' it's such a hard question." Like he was dreading opening up in that way but that's what this whole thing is about. Sharing his experience so I understand him fully, just like he is understanding me by reading these posts.
I proceeded to ask how he felt in the beginning, I wanted to leave the questions as open as possible. He said in the beginning that he didn't really take any of it in, the information of the miscarriage, because he was instantly focussed on me and how I was and making sure I was ok. He said he feels horrible but he didn't think about Bean as much because he was so focussed on me and looking after me. He didn't take anything else into account. Similarly to how my world closed in around me his closed in around him but he described me as being at the end of the tunnel and everything else was closed in all around him, further explaining the focus he had on me and me only. It took me a little while to understand this analogy. I thought he was saying that I was far away from him but I'd gotten the wrong end of the stick. He then went on to say that it wasn't until during the 2 week wait when he read my letters to Bean previously talked about in this blog that he really thought about Bean and the actual loss and realised what had happened. I guess this was shock taking over his mind really. His brain had chosen to focus on one thing and that happened to be me and he was unable to process any other information. I remember him being quite emotional when he read the letter to Bean. I think that was the first time I had seen him cry since we were given the devastating news. However, he didn't really know whether he felt emotional reading it because he was reading and feeling my emotion and grief for Bean rather than feeling his own grief himself.
I asked him about his connection with Bean, as a mother I felt a connection as soon as we got a BFP, probably even beforehand as I knew we were pregnant before I took the test. But he felt he didn't really have that same sort of connection. I think that's fairly common in fathers, I think the idea of a pregnancy and a baby that is so tiny is rather abstract for a father, especially a first time father. He said even looking at the scans of Bean he didn't know what he was looking at, Bean never looked like a baby and he never moved or was ever going to. Whereas seeing Passenger on the screen moving around and looking like a baby gave him a much stronger connection. I don't think for any second that Bean is loved any less at all but Rob saw him as a "pre-person", he was a bundle of cells and to Rob Bean was still part of me, not a life in his own right. I don't agree with this view but I think that's the difference between the mother and the father, mothers feel a connection straight away which is very strong, mothers know their child longer than the father does. And seeing something on the screen, although amazing, still doesn't seem real.
I asked him about the crash, he felt immense guilt after the crash because he thought he was the cause of Bean's death. One momentary lapse of concentration for a split second could have caused all of this. But we know the crash wasn't the cause, Bean had stopped growing three weeks before we had that bump in the car. He said even while we were waiting in A&E he was sorting out insurance and other things so again he was not thinking about Bean, and only thinking about me. I suggested him throwing himself into other things could have been a coping mechanism and he agreed, although all of the insurance stuff would have needed to be done anyway. It's not like he was throwing himself into pointless tasks and burying his head in the sand, he was holding the fort and doing all of the jobs that I couldn't do because I was stressed and worried and later after we were given the news I was incapable of functioning.
He mentioned how naive he was back then while waiting in the early pregnancy unit for the first scan. He remembers the very sad couples in there but never thinking that we would be one of those couples. I completely shared his naivety, I never thought for a second we would have been the 1 in 4 that suffer miscarriage and after being told and going through it we both have said that we wouldn't be able to enjoy a pregnancy again, for at least the first 12 weeks if not longer now with what happened with Passenger.
We talked about our visits to Oxford, being told officially that Bean had died. Rob said that he didn't know how he felt then which is totally understandable, there is no way to describe that feeling when you are told that news. He said he had wanted me to make the decision regarding our options as it was my body, and he would have gone with whatever I decided. Again his main focus was to keep me safe because I really broke down after that news. My world caved in and all Rob could do was to shield me as best he could. He said that no one talked to him in that hospital at all, no one even looked at him. I was appalled to hear this and also ashamed because I never noticed at the time. He said I was the centre of attention, not in a horrible way but that's the way it was, but the fact was that half of Rob had died too and the way he has been treated throughout the process of both of our losses has been terrible. Not that he has been treated badly but just completely ignored through the process. He told me about the nurses that didn't even look at him when we were both in appointments, and consultants that didn't acknowledge him. He felt empty and helpless but again he was holding me up, that's the recurring theme in his speech. He was holding me up, physically in a lot of cases but mentally all the time. That's the job he had taken upon himself, he didn't think about anything, he didn't have questions for the doctors that ignored him he just instantly became my rock when I collapsed.
Much like in war film when a grenade goes off and the the background noise of the film becomes muted, that's how he saw and felt things when we were given the news. Again the focus was on me but everything else was muted and muffled so he didn't hear or think anything. Completely understand this analogy, where he had muted sounds I had muted colours in my life. My world literally became black and grey when we went through the loss of Bean and subsequently suffered depression afterwards. My world became pale, that's where the name of this blog comes from.
This is taking way longer than I anticipated and creating a very long post so I will split it into two or three sections. I hope this is helpful for you all. It's been really hard for Rob to talk about our loss of Bean and talk about his emotions and for him to open up for 40 minutes has been amazing.
Stay strong,
Adele xxx
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