I published my blog on 18 July 2017. The day the midwife initially gave me as a due date. Before a scan pushed it further back. I knew it would be pushed back, but I wasn't expecting to be told our wedding anniversary as the due date!
When I first found out I was pregnant at the end of November, I had been in my new job not even a month. I was immediately anxious about how they would take it when I told them (the other people I worked with perhaps more so than my employers, as I knew there were laws in place protecting me from that side.) I made my first doctor's appointment for early morning, so I wouldn't have to take time out of work to explain anything. I made my first midwife appointment for when I had already planned annual leave, just before Christmas.
I started my job on 7 November 2016; on 21 November 2016 I made a small mistake that I was able to fix with a tiny work-round (I destroyed papers too early, but scanned them, simples!); on 22 November 2016, a person who found out about that mistake tried to emphasise that I had done things wrong by asking for said papers that I had destroyed, I was told that it was "not the way it's done here"; on 23 November 2016 I was spoken to by the same person as I arrived in for the day, but backed up by someone else (who I am forever grateful to), who told her in no uncertain terms that what she was asking was actually not the way it was done, and I was following procedures; also on 23 November 2016 I was asked by a manager to justify time off I had requested (that had been arranged before I started the job!) because someone else had also requested it; on 24 November 2016, I had a meeting with that same manager, to raise a complaint about bullying, and inform her that the job was not what I expected. During the course of the conversation she suggested to me that I better not be sitting in another co-worker's seat. (Said co-worker was off due to hyperemesis, and had been since week 5 or 6 of her pregnancy I think. She basically told me that I should not be getting pregnant.) It was 27 November 2016 when I peed on the stick and confirmed I was pregnant.
I'm not sure at what stage I felt trapped in the job, but I knew from very early on that it wasn't for me. I remember a conversation with my mother, telling her about my problems with work, she suggested I look out for other jobs. This however, was after I knew I was pregnant, but before she did! I felt that the way they ran things versus the way things could have been grown organically, changing as needs dictated, rather than remaining with the way things had always been done until reviews took place was very stagnant. It didn't help that someone who I was supposed to support wanted to dictate the way I did everything, rather than being happy that I was trying to make things more efficient for myself. I reported her for bullying, and it was "dealt with" but I'm not really sure how, and I never heard an apology.
In any case, I felt like I was stuck there until I went on maternity leave. I felt like it couldn't come quick enough. I felt like there were more people in the team who were out for themselves, than for actually working together. Laying down and rolling over to how things were always done, rather than challenging things. Yet always complaining complaining complaining about everything.
So when I first miscarried, I felt as though the end was not in sight. I would try again; and have to stay working there for longer. I could probably refer to my job as salt in the wound of my miscarriage.
Those complainers? I got sucked in, I complained, to them, about the job, about the way things were done, about the way things were written about the way things were done!! Turns out, I then had a complaint made about me, about the way I was complaining about the way things were written about the way things were done (and breathe) I know I had been complaining, I thought about the same things they were, obviously not. I was told by my line manager that the language I used had been inappropriate, and I nodded at "crap", but when she said it had been reported that I had used a word that I have never used in my life in that way, well, I think my reaction was enough for her to know it hadn't been said. A truncated version of that word is often followed by the word resort, as in "Spa-Resort". So yes, not exactly appropriate, to say the least! It was after learning that that I re-doubled my efforts to leave, I was already stressed enough about what I was facing in my personal life, I was not planning on sticking around longer than I had to and face the stress at work too. I had stopped being able to sleep a while prior to that, which I attribute to the job. It was quite a toxic environment. In discussions with my husband afterwards, he asked if I was sure that my line manager had not over-emphasised the language to get me in trouble and put me in my place. Given she was off sick for much of my employment, I don't really know her well enough to say, but that's also a rather grim possibility.
I think we all have to look at the silver linings. The day after I published my blog I had a job interview. I think if I'm going to move jobs, the best time to do so is well before IVF starts, so I can get to know everyone, actually enjoy going to work, put the effort in, and not just feel like I'm using them for maternity leave!
I handed in my notice on 21 July 2017, and I was terrified. Mostly that it was a frying-pan/fire scenario, but I reasoned that it couldn't really get much worse, and besides, I had got a good vibe at the interview. I did not have the best working experience where I was, partially through my own restraint in getting to know people because I was concerned about the pregnancy affecting that, but mostly because of other people's reactions to me and to change. I think part of my desire to leave was also because it was a constant reminder, while there, of what a traumatic personal experience I'd been through, with half the (small) "team" off on maternity leave, and the fact that not everyone (in the building, out-with the "team") even knew I had been pregnant. That is, apart from the people who the manager who told me not to get pregnant told, which I'm pretty sure is a breach of the data protection act. Some of them I had never met. I couldn't bring myself to raise a complaint about that one though.
I find my emotions flip flop. At times I am thankful for the way things worked out, that the miscarriage led to a better job, that the job led to looking at that specific time to lead to the better, very different job, that the miscarriage gave us some answers, and a way forward. Other times I wish I didn't know, I am annoyed that I wasted so much time in that job, I am annoyed that I held back for the other opportunities that could present themselves through the awful job. In the end though, I can only look forward.
I had my last day on 15 August 2017; my youngest niece's 1st birthday. I had to take some enforced annual leave for my last three days, because it was written into my contract that any holiday time that could be used, should be, and if it was not, I would not be paid-in-lieu. While a bit of free cash would not have been un-appreciated, for my mental health, those three days were wonderful. I left in the middle of the afternoon (the joys of flexitime) and had a strange evening, my body felt so light and unusual. I felt exhausted, tried to nap, and realised I was not tired. I had not realised quite how much stress I was under until I knew I never had to return. I'm glad that I am not currently on maternity leave from that job, thinking about the best time to apply for other jobs, because I would not have wanted to return, and I would not want worrying about work to have distracted me from motherhood. I hope that this time around, I am in a more supportive environment, although from my experiences, I don't think that will be too difficult.
Tuesday 9 January 2018
19 June 2017
We were referred to a geneticist for more information by my consultant. I'm not sure what I was expecting in that meeting, I think in advance of it we were expecting more answers about what to expect. I had a lot of questions written down, which I brought with me, unfortunately the geneticist had no more information than my consultant, in terms of the IVF questions we had.
We had about 12 questions, 9 of them were about IVF, and he couldn't answer them. Of the remaining 3, two were essentially the same question, and he explained that the process of looking at the chromosomes would destroy an unfertilised egg or sperm, as unlike everything else that contains chromosomes, they only have one copy of each, or they should only have one copy of each, so can't be looked at! The last question he answered, although I think I had always somehow known that would be the answer!
The first thing he did when we arrived was take a genogram of my husband's family. He asked if there was a history of disabled children, a history of miscarriage, and a few other questions. I think this was more to provide him with information to be able to inform us, rather than anything else.
We advised him that my ob/gyn had requested blood testing of my husband's parents, to check if either of them have a balanced translocation too. He informed us that this information might give him more information of our chances, but was very vague. In fact, I think his specialty was not anything more than an ability to give incredibly vague answers.
Prior to going, my ob/gyn had informed us in that first meeting where we were told about the balance, that the chances were 50% unaffected child, and 50% affected, but it may not be as simple as that, because the sperm may not be as good swimmers if they are affected, and he was unable to give us answers on the possibility of disabled children. He indicated that the geneticist would have more answers. The geneticist did not.
The geneticist did not confirm that sperm being affected, rather than eggs, changed the chances, but acknowledged that it was a possibility.
The geneticist advised us that it was likely that the chances were 50% unaffected; 40% affected and miscarriage; and 10% disabled child. He also informed us that due to where the chromosomes were split, there was a significant portion of 13 attached to 4, and not as much of a significant difference attached to 13 from 4. So, we had a small amount missing from 4, and a significant amount extra of 13. He explained that when there is a large amount of missing material a baby is unlikely to survive, and so the unbalanced option that we did not experience may never even make it to a positive pregnancy test.
If you look at the section before the contents on this Wikipedia page, it has a few notable pieces of information.
Most cases of aneuploidy result in death of the developing foetus.
The most common extra autosomal chromosomes among live births are 21, 18, and 13. (This refers to a full extra copy I believe.)
21 is well known, Down's syndrome. 18 is Edward's syndrome, something I had heard of, but the prognosis is poor, with babies unlikely to survive beyond one year.
13, that's the one I am concerned with. Full Trisomy 13 is a condition called Patau syndrome, and the prognosis is pretty bleak for infants with the condition. Our baby had partial trisomy 13, which I'm not sure is worse or better. In addition there was a bit missing of 4, which will also have had an impact.
According to Wikipedia (whaaaat?! This isn't an intellectual blog, I can cite wiki if I like!) Many infants with trisomy 13 have difficulty surviving the first few days or weeks due to severe neurological problems or complex heart defects.
More than 80% with Patau die within 1st year of life.
The geneticist cannot have all the answers, because he is looking at theoretical possibilities, with no cases just like ours to properly study, except for what was found in the post-mortem. I don't have a medical degree, and using doctor google, I can see various possibilities with unbalanced children. The option we had, too much lemonade, resulted in a child that was not able to survive. However that may not always be the case, depending on the other chromosomes at play, I don't know. The other unbalanced option, too much beer and not enough lemonade, well usually that results in a hangover, but in our case the child would have a lot missing from 13, and not much extra from 4. Although the geneticist suggested that this option would be less likely to survive than the first. (Probably something to do with having too much beer, really shouldn't give babies beer you know, bad for them!) He did not go into any great detail on the likely possibilities, I'm not sure if he didn't want to tell us something that would later turn out not to be true, but I wanted some information rather than no information.
The geneticist gave us what information we had been told in previous appointments by my consultant, and a little more that I found with the help of doctor google. I'm not in the habit of using doctor google, he pretty much always tells his patients they have cancer, but I got more information from him because it's such a different and difficult thing to get your head round that even trying to remember what it's called was hard enough, and we were looking for information we had forgotten in the first overwhelming meetings.
Over a month after that appointment, we received a letter dated 21 July 2017, telling us the following:
1. My pregnancy loss was caused by a chromosome abnormality.
2. Everyone should have 23 pairs of chromosomes.
3. My pregnancy had lost genetic material from a region of chromosome 4 and had an extra copy of material from a region of chromosome 13.
4. My husband has a balanced translocation.
5. The outcomes of that translocation (i.e. the lemonade&beer option, the two shandies option, or "other combinations" options.
6. The other combinations options are likely to miscarry but can result in the birth of a handicapped child. Estimated risk of live birth of handicapped child: 10%.
7. The chromosome rearrangement in my husband could have arisen in him, or could have come from his parents.
8. We told the geneticist that my husband's parents had blood samples taken for testing.
9. They can test for chromosome abnormalities from the 12th week of pregnancy through chorionic villus sampling, or the 16th week of pregnancy through amniocentesis. The risk of miscarriage is 1-2% and 0.5-1% respectively.
10. It may be possible to avoid having pregnancies with chromosome abnormalities using pre-gestational diagnosis (PGD). He referred us to the PGD clinic in Glasgow to discuss this option. Only embryos without an unbalanced rearrangement are implanted.
Number 2 we knew before ever getting pregnant. Number 8... we knew that, we told him that! Apart from the statistics, numbers 1, 3, 4, 5, 6, 7, 9, & 10? My ob/gyn told us those. The only two things that letter told us that we didn't already know was that PGD does not just stand for pre-implantation genetic diagnosis, but also stands for pre-gestational diagnosis (which I feel is a mis-nomer, as what if no gestation occurs?) and that we were not referred on for IVF treatment until 21 July, over a month after our appointment. I'm not sure if it's protocol within the NHS, but it felt like a complete waste of resources. Well, not a complete waste...
He did give us one piece of information during the appointment that was nice to know. Alex was a girl. Alexis. ❣️
We had about 12 questions, 9 of them were about IVF, and he couldn't answer them. Of the remaining 3, two were essentially the same question, and he explained that the process of looking at the chromosomes would destroy an unfertilised egg or sperm, as unlike everything else that contains chromosomes, they only have one copy of each, or they should only have one copy of each, so can't be looked at! The last question he answered, although I think I had always somehow known that would be the answer!
The first thing he did when we arrived was take a genogram of my husband's family. He asked if there was a history of disabled children, a history of miscarriage, and a few other questions. I think this was more to provide him with information to be able to inform us, rather than anything else.
We advised him that my ob/gyn had requested blood testing of my husband's parents, to check if either of them have a balanced translocation too. He informed us that this information might give him more information of our chances, but was very vague. In fact, I think his specialty was not anything more than an ability to give incredibly vague answers.
Prior to going, my ob/gyn had informed us in that first meeting where we were told about the balance, that the chances were 50% unaffected child, and 50% affected, but it may not be as simple as that, because the sperm may not be as good swimmers if they are affected, and he was unable to give us answers on the possibility of disabled children. He indicated that the geneticist would have more answers. The geneticist did not.
The geneticist did not confirm that sperm being affected, rather than eggs, changed the chances, but acknowledged that it was a possibility.
The geneticist advised us that it was likely that the chances were 50% unaffected; 40% affected and miscarriage; and 10% disabled child. He also informed us that due to where the chromosomes were split, there was a significant portion of 13 attached to 4, and not as much of a significant difference attached to 13 from 4. So, we had a small amount missing from 4, and a significant amount extra of 13. He explained that when there is a large amount of missing material a baby is unlikely to survive, and so the unbalanced option that we did not experience may never even make it to a positive pregnancy test.
If you look at the section before the contents on this Wikipedia page, it has a few notable pieces of information.
Most cases of aneuploidy result in death of the developing foetus.
The most common extra autosomal chromosomes among live births are 21, 18, and 13. (This refers to a full extra copy I believe.)
21 is well known, Down's syndrome. 18 is Edward's syndrome, something I had heard of, but the prognosis is poor, with babies unlikely to survive beyond one year.
13, that's the one I am concerned with. Full Trisomy 13 is a condition called Patau syndrome, and the prognosis is pretty bleak for infants with the condition. Our baby had partial trisomy 13, which I'm not sure is worse or better. In addition there was a bit missing of 4, which will also have had an impact.
According to Wikipedia (whaaaat?! This isn't an intellectual blog, I can cite wiki if I like!) Many infants with trisomy 13 have difficulty surviving the first few days or weeks due to severe neurological problems or complex heart defects.
More than 80% with Patau die within 1st year of life.
The geneticist cannot have all the answers, because he is looking at theoretical possibilities, with no cases just like ours to properly study, except for what was found in the post-mortem. I don't have a medical degree, and using doctor google, I can see various possibilities with unbalanced children. The option we had, too much lemonade, resulted in a child that was not able to survive. However that may not always be the case, depending on the other chromosomes at play, I don't know. The other unbalanced option, too much beer and not enough lemonade, well usually that results in a hangover, but in our case the child would have a lot missing from 13, and not much extra from 4. Although the geneticist suggested that this option would be less likely to survive than the first. (Probably something to do with having too much beer, really shouldn't give babies beer you know, bad for them!) He did not go into any great detail on the likely possibilities, I'm not sure if he didn't want to tell us something that would later turn out not to be true, but I wanted some information rather than no information.
The geneticist gave us what information we had been told in previous appointments by my consultant, and a little more that I found with the help of doctor google. I'm not in the habit of using doctor google, he pretty much always tells his patients they have cancer, but I got more information from him because it's such a different and difficult thing to get your head round that even trying to remember what it's called was hard enough, and we were looking for information we had forgotten in the first overwhelming meetings.
Over a month after that appointment, we received a letter dated 21 July 2017, telling us the following:
1. My pregnancy loss was caused by a chromosome abnormality.
2. Everyone should have 23 pairs of chromosomes.
3. My pregnancy had lost genetic material from a region of chromosome 4 and had an extra copy of material from a region of chromosome 13.
4. My husband has a balanced translocation.
5. The outcomes of that translocation (i.e. the lemonade&beer option, the two shandies option, or "other combinations" options.
6. The other combinations options are likely to miscarry but can result in the birth of a handicapped child. Estimated risk of live birth of handicapped child: 10%.
7. The chromosome rearrangement in my husband could have arisen in him, or could have come from his parents.
8. We told the geneticist that my husband's parents had blood samples taken for testing.
9. They can test for chromosome abnormalities from the 12th week of pregnancy through chorionic villus sampling, or the 16th week of pregnancy through amniocentesis. The risk of miscarriage is 1-2% and 0.5-1% respectively.
10. It may be possible to avoid having pregnancies with chromosome abnormalities using pre-gestational diagnosis (PGD). He referred us to the PGD clinic in Glasgow to discuss this option. Only embryos without an unbalanced rearrangement are implanted.
Number 2 we knew before ever getting pregnant. Number 8... we knew that, we told him that! Apart from the statistics, numbers 1, 3, 4, 5, 6, 7, 9, & 10? My ob/gyn told us those. The only two things that letter told us that we didn't already know was that PGD does not just stand for pre-implantation genetic diagnosis, but also stands for pre-gestational diagnosis (which I feel is a mis-nomer, as what if no gestation occurs?) and that we were not referred on for IVF treatment until 21 July, over a month after our appointment. I'm not sure if it's protocol within the NHS, but it felt like a complete waste of resources. Well, not a complete waste...
He did give us one piece of information during the appointment that was nice to know. Alex was a girl. Alexis. ❣️
30 April 2017
My birthday on 4 April, I was asked what I wanted for it (ever practical, I see no point in giving or receiving gifts that will be wasted, and would much rather the gift of time with friends.) Anyway, there are a few pieces of background info that you may need to know before I move on.
There is a pregnancy hormone called relaxin that can be present in your body for up to a year post-partum, and starts to build when you first fall pregnant. I am quite physically active, and I learn and teach aerial silks/trapeze/hoop/rope/any other aerial apparatus I get a chance to! Ok, so I don't teach past trapeze in that list, but you get the idea. The two weekends before my miscarriage I was at a silks teacher training course. Probably about the week I fell pregnant I was in an aerial show. I really needed a massage.
The importance of point one is that when pregnant, you are supposed to avoid massages unless specifically designed for pregnant women. Also, as the hormone hangs around, you need to be careful afterwards too, so you don't damage yourself!
For my birthday, I asked for a really good massage. I got one! Lee bought me a voucher for "The Good Hour" a Lush massage that is a mixture between deep tissue and the less painful relax-y types. When I got the voucher, I was at that time unaware that we shouldn't start trying again straight away, so I booked an appointment for the first available date that worked for me. That happened to be 30 April 2017. I made a few arrangements to catch up with friends before/after my appointment, but life being life, one or two were visiting family, others already had plans, and one hadn't got back to me; although that can be attributed to my complete inability to make plans in any sort of decent timescale. I think part of me wasn't sure if I would want to see anyone by then, do the catch up thing, in case they acted as others had, like I should be over it already. I got over that worry as I knew my friends would support me, and managed to arrange some stress-free catch ups!
I did a spot of shopping, then made my way along the busy shopping street into the sanctuary of The Lush Spa! When I was completing the history form that helps them treat you properly, I shared that I had had a miscarriage, and the question about likely to be pregnant was a hard one to answer, and I left the question blank that asked if I was currently trying to get pregnant; technically the answer was no, but that's not strictly true. I spoke a bit about what muscles might be tense, and what I get up to in my spare time. We smelt the different massage bars I could choose from, and chatted a bit about things I had used. She noted that one of the bars had almost the same scent as a bath bomb, but I wasn't familiar - I told her I preferred bubbles to bombs!
Then the massage. What a wonderful massage! For those of you who don't know, having a massage in a Lush Spa is not like an ordinary massage, it's a whole other experience! There was the smoke floating across the floor like waves on the shore. Then there were the smells! I love the sea, and the seaside, and fresh smells, and that was what I had in the basement spa in the centre of Edinburgh!
When I had gathered my belongings and my senses (which had been massaged into mush) the therapist came to me with a cup of tea and it was almost like she apologised for not getting all the knots out! She acknowledged that there is only so much can be done in an hour! After I sat for a while with my tea and shortbread, I was shown back upstairs, and right before I left, I was given a treat, of a bubble bar, in a scent she knew I liked, and an instruction: to go home and treat myself further, as I'd had a rubbish start to the year! Although I had been thinking more about it through the day, as I was sharing the shandy part of the news with a friend, and having the massage that would not have been possible, it was only then that I was close to tears, it was just a lovely and unexpected gesture and when I did eventually have that bath, all I could do was smile.
I managed to get hold of another friend for a catch up after I left Lush, saw her new place, chatted to her and her dad for hours, as I left, I had this overwhelming sense that the visit had been good for the soul.
Sometimes, it's the little things!
There is a pregnancy hormone called relaxin that can be present in your body for up to a year post-partum, and starts to build when you first fall pregnant. I am quite physically active, and I learn and teach aerial silks/trapeze/hoop/rope/any other aerial apparatus I get a chance to! Ok, so I don't teach past trapeze in that list, but you get the idea. The two weekends before my miscarriage I was at a silks teacher training course. Probably about the week I fell pregnant I was in an aerial show. I really needed a massage.
The importance of point one is that when pregnant, you are supposed to avoid massages unless specifically designed for pregnant women. Also, as the hormone hangs around, you need to be careful afterwards too, so you don't damage yourself!
For my birthday, I asked for a really good massage. I got one! Lee bought me a voucher for "The Good Hour" a Lush massage that is a mixture between deep tissue and the less painful relax-y types. When I got the voucher, I was at that time unaware that we shouldn't start trying again straight away, so I booked an appointment for the first available date that worked for me. That happened to be 30 April 2017. I made a few arrangements to catch up with friends before/after my appointment, but life being life, one or two were visiting family, others already had plans, and one hadn't got back to me; although that can be attributed to my complete inability to make plans in any sort of decent timescale. I think part of me wasn't sure if I would want to see anyone by then, do the catch up thing, in case they acted as others had, like I should be over it already. I got over that worry as I knew my friends would support me, and managed to arrange some stress-free catch ups!
I did a spot of shopping, then made my way along the busy shopping street into the sanctuary of The Lush Spa! When I was completing the history form that helps them treat you properly, I shared that I had had a miscarriage, and the question about likely to be pregnant was a hard one to answer, and I left the question blank that asked if I was currently trying to get pregnant; technically the answer was no, but that's not strictly true. I spoke a bit about what muscles might be tense, and what I get up to in my spare time. We smelt the different massage bars I could choose from, and chatted a bit about things I had used. She noted that one of the bars had almost the same scent as a bath bomb, but I wasn't familiar - I told her I preferred bubbles to bombs!
Then the massage. What a wonderful massage! For those of you who don't know, having a massage in a Lush Spa is not like an ordinary massage, it's a whole other experience! There was the smoke floating across the floor like waves on the shore. Then there were the smells! I love the sea, and the seaside, and fresh smells, and that was what I had in the basement spa in the centre of Edinburgh!
When I had gathered my belongings and my senses (which had been massaged into mush) the therapist came to me with a cup of tea and it was almost like she apologised for not getting all the knots out! She acknowledged that there is only so much can be done in an hour! After I sat for a while with my tea and shortbread, I was shown back upstairs, and right before I left, I was given a treat, of a bubble bar, in a scent she knew I liked, and an instruction: to go home and treat myself further, as I'd had a rubbish start to the year! Although I had been thinking more about it through the day, as I was sharing the shandy part of the news with a friend, and having the massage that would not have been possible, it was only then that I was close to tears, it was just a lovely and unexpected gesture and when I did eventually have that bath, all I could do was smile.
I managed to get hold of another friend for a catch up after I left Lush, saw her new place, chatted to her and her dad for hours, as I left, I had this overwhelming sense that the visit had been good for the soul.
Sometimes, it's the little things!
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