What exactly did OTMA know about Alexei's illness?

[Sunny]

I've used the search engine, sure that had already been discussed, but found nothing exactly about what i'm wondering; but if i missed it for mistake, i hope Mods will merge this thread.

I was wondering WHAT exactly did OTMA know about Alexei's illness. of course they knew he was chronically ill and that his illness was a secret (and they kept it) and maybe also its nature (bloos deases), which i think is quite easy to understand. But do we know whether they know something more precise? Or, better - what do you think they knew (i fear it's impossible to know what they indeed knew, since they kept the secret). Do you think Alexandra ever told them something about it? Did they even know the name of it? And did they know they could pass it to their sons? We going on speculating on DNA, but i really would like to imagine how the girls saw all of this.

[Robert_Hall]

Interesting question, Sunny. Especially as there was a possibility that  that the girls could have carried it as well. Who would explain that to them when the possibility of marriage came up ?

[Sunny]

Who would explain that to them when the possibility of marriage came up ?

I was wondering it as well

[edubs31]

Sunny, good topic!

OK here's my take...I've asked myself that question before and not surprisingly have struggled to find answers. I can only speculate that Rasputin's influence over the family played a major role in how the disease was described to the girls. Anything that actual doctors could have suggested about the likelihood of each daughter being a carrier could easily have been suppressed by him or, the very least, could have been contradicted.

If Rasputin told the Empress to ignore the doctors, or any evidence that supported the "carrier" claim, and that the daughters were in normal health, I'm sure she would have believed him. Hemophilia carriers can of course lead perfectly normal lives but most have a greater propensity to experience abnormal bruising and bleeding as well. I was just taking a look at one study that said hemophilia carriers were 13% more likely to bruise and 20% more likely to sustain "long term bleeding" after a bruise. This to go along with a 30% rate of excessive bleeding after operations, up from 11% for general non-carriers (more on that in a moment). However, for reasons I'm not sure of, nose bleeds were actually slightly less common.

With the exception of one event I'm not sure there were enough observable instances that would encourage people to believe one or more of the daughters were carriers. Not that they didn't engage in any physical activity but these aren't adolescent boys from blue collared neighborhoods we're talking about here. It's not like they were playing tackle football and getting into fist fights, lol. I'd think significant bruising, would be pretty limited.

So what do we know?

Well we know Anastasia had some physical ailments but nothing to suggest they were related to the "Royal Disease". I believe we are also are told by Olga Alexandrovna (confirmation anyone?) that Maria suffered a hemorrhage during the removal of her tonsils at the age of 15. We also know what DNA evidence tells us that in addition to Alexei's suffering from the terrible disorder that either Anastasia (as claimed by Russian scientists) or Maria (claimed by the Americans) was a hemophilia carrier. Furthermore we have diary entries that seem to make no mention of it. No entries, to my knowledge, from the Empress that read something like, "I keep a dark secret to protect my daughters, that one of their future lines are likely to experience the same hardship as I have with poor Alexei". Nothing from the daughters that says something to the degree of "Sad day as Mama/Papa/Father Grigori tells us we too may someday pass along Baby's terrible illness to one of our sons", etc.

Did Maria's apparent hemorrhage throw up a red flag? Were OTMA concealed from the truth by their parents (like they were from so much of the outside world) that they too were likely to have fathered at least one symptom carrying boy between them? Did Rasputin's role of mystic and "healer" to Alexei also extend to the daughters? Would love to know!

[Sarushka]

Since I don't recall ever running across a direct mention of hemophilia by name in the IF's letters and diaries, I suspect Aleksei's condition was something that was implicitly understood, rather than explicitly discussed. Even if the GDss did not know the precise medical aspects of the disease and its genetics, constant exposure to hemophilia would likely have given them an excellent working knowledge of it. I also think it's reasonable to presume that they had some basic sense of how the disease is carried and passed, considering that a number of their maternal uncles and male cousins also suffered and/or died from it.

This is essentially the approach I took in The Lost Crown. Hemophilia is so commonplace to the GDss, it's only mentioned twice by name, and not until chapters 13 & 25. In both instances, Tatiana is the one who discusses it. Since she showed the most interest in and aptitude for nursing, it seemed logical that she would have the most technical knowledge.

[Cambria_Coheed]

That is a really good question. I dont think they would have been told of his exact disease, and if they were it wouldnt have been until they were older and more aware of their brothers failing health at times. I mean when the girls were younger i dont think they would have questioned too much whenever a toddler Aleksei fell and was bedridden. They probably just accepted the fact that their baby brother was fragile and got sick often. I know when my brother was around 8 or 9 he didnt question about my epilepsy, just that i would get sick and not be able to go to school.  However as they got older im sure they asked more questions, especially if they were to look back on their mothers family history and noticed the pattern. That and when Olga and Tatiana had to care for Aleksei before they were reunited with their parents and Maria, you would have thought Alexandra would have given the girls a precise instruction of his care. Then again she may not have. We really dont know, thats just my take on things.

[Robert_Hall]

Interesting observations everyone. And, of course we are all just speculating. There is no way we will ever know unless some undiscovered letters come to light, some day.
 I agree though, that older girls might have been more knowledgeable about this, as they were not only approaching the marriage market, they had also been trained as nurses so might have been a bit more aware ?

[Cambria_Coheed]

I mean i was just thinking, the cautious and overprotective mother that Alix was, when she left her son in Toblosk with Tatiana and Olga in his state, i do believe she would have given them instruction on his care. Not to mention another thing i had been thinking about there had to been talk within the other royal courts about the disease, even their own court. Certainly that knowledge would have gotten to the older girls. I mean think of Olga, i mean if im correct they tried to set her up with Karol of Romania, im sure Missy was worried about the possibility of that disease, i wonder if it ever came up in a discussion between all of them...but like you said robert we're all just guessing here

[EmmyLee]

Yes, good topic. It would be really interesting to know the girls' thoughts on the possibility of their own sons suffering as their brother did. It makes me sort of wish that their diaries were a little less day-to-day and a little more about their thoughts and feelings.

[Cambria_Coheed]

I know! but i wouldnt write much either if my diary was being read by someone other than myself! just think of all the interesting stuff we would know about them if they did.
As for their thoughts, being a woman whos about to get married in a couple weeks, I would be devestated if i knew there was such a risk of having a little boy with such a grave illness. You always imagine the perfect husband, pefect house, perfectly healthy children... I think any woman would feel that way...the fear, you know? Not to mention in a way a guilt knowing you were the one who gave your child this disease, even though you can't help it.

[edubs31]

XJaseyRaex) well congrats on your soon to be marriage! I get hitched in May! Very exciting times for us :-)

Back to the topic at hand I think Sarushka's explanation probably makes the most sense...including my own Rasputin centered theory. I'm still pretty curious, assuming the event actually happened, about the impact (if any) of Maria's apparent hemorrhage in 1914. I wonder if the topic of hemophilia could have been supressed or taboo up to that point but then prompted some seriously family discussion afterwards...

[Sunny]

Thanks everyone, i'm so glad to know your opinions!
XJaseyRaex, edubs31 congrats!!

Since I don't recall ever running across a direct mention of hemophilia by name in the IF's letters and diaries, I suspect Aleksei's condition was something that was implicitly understood, rather than explicitly discussed. Even if the GDss did not know the precise medical aspects of the disease and its genetics, constant exposure to hemophilia would likely have given them an excellent working knowledge of it. I also think it's reasonable to presume that they had some basic sense of how the disease is carried and passed, considering that a number of their maternal uncles and male cousins also suffered and/or died from it.

This is essentially the approach I took in The Lost Crown. Hemophilia is so commonplace to the GDss, it's only mentioned twice by name, and not until chapters 13 & 25. In both instances, Tatiana is the one who discusses it. Since she showed the most interest in and aptitude for nursing, it seemed logical that she would have the most technical knowledge.

I indeed found your opinion very interesting while reading your book, Sarushka and admit i was keen to read you personal thoughts here, since i seconded them while reading.
I found interesting that in the depositions in Wilson's book, Gibbes is very vague about Alexei's illness, while Gillliard explains it with quite accuracy and i started wondering what was IF's position, Of course their position was much more like Gibbes', but still i thought: Gilliard said he asked the doctors about that, what if the girls (expecially OT) would have asked it too? I knew they wouldn't have done it, but...
Moreover, I think you're right, Sarushka, about nursing. Learning something medical they would have surely done comprarisons or thought to their brother, since his illness was one of the main aspect of their lives. If Alexei hadn't been ill, the whole life of IF would have been different, This is not speculation, it's just a matter of fact - we know how much Alexei's disease impacted on his family life (and obviously).

Of course we're speculating. We can't know the thruth alas; but i think it's a crucial point to discuss for everyone who want to know something more about, or better understand OTMA'S psychology.

[feodorovna]

HUGE congrats to you two soon to be marrieds and Sunny, speculating I can cope with, however, if we are to learn of, or more of OTMAs psychology we must examine that of their parents.

I don't see Alexandra as having had a childhood in which she shared much time with a peer group. I see a lonely, isolated childhood during which she had little choice than to keep "things". to herself. I see her as being a child who did as she was told, perhaps from fear that if she didn't, this new, significant other would be lost to her, as had her Mama and siblings. She would have carried this tendency to secrecy with her into adulthood simply as a way of being and passed it, unconsciously, to her children. To Nicholas, she could do no wrong and to her children she was just Mama. I feel it may have been possible that she bent the truth regarding Alexei's illness, perhaps using words like "delicate" or "different" in her referals of him and I think it very possible that she was in denial, the ramifications of this disease and how it could effect her WHOLE family must have been intolerable, more so if she held the secret belief that she was responsible for it. I feel that familial discussion about the "condition" was not encouraged and I feel quite certain that when those other family members who shared it died, within the IF, it was never voiced out loud that X or Y had died of haemaphilia so it may be possible that OTMA never made the connection. Another possibility could be that Alexandra told OTMA that Alexei's illness was not to be discussed with others but I feel that this would have been unnecessary. Because they were so closely enmeshed OTMA would undoubtedly have taken their cue from their mother. It is very likely that whilst it was all being played out in front of them, so detatched were they from the effects of the disease that they may have had little realisation of what it could do to them. It may have been that, unconsciously, Alexandra had sought to keep them emotionally immature-and perhaps seen as unmarriagable-as a way of keeping them safe.

This, of course, is all speculative and just MHO!!!

[Kalafrana]

Feodorovna

I think that what you say makes a lot of sense. I suspect that all Queen Victoria's descendants were to some extent in denial about haemophilia! Except possibly with Alfonso XIII, no one seems seriously to have come out with the obvious question - 'Is it really a good idea to marry a girl whose brother is/was haemophiliac?' I suspect there was a good deal of concealment of the true nature of the various brothers' illness.

As to Alexandra, one of the things that tends to be forgotten is the age gap between her and the other surviving Hesses. Irene, the youngest of the sisters, was six years older, which is a long gap in childhood, and Ernst four years older. The three elder girls, all born in the space of three years, would form a natural unit. Ernst was then two years younger than Irene, but the only boy, so to some extent separate from them, but Alexandra was really by herself.

Ann

[feodorovna]

Thanks for that, Ann. That is precisely why I rather labour the point of Alexandra's loneliness in childhood and how it would have coloured her adult life. The agegaps you mention would be enough to isolate her and if she didn't learn to socialize as a child she would find it difficult as an adult, and may never accomplish it with ease other than with those to whom she felt close, and those would probably be few. To me, it says so much about her.

Best wishes, Jane