Hemophilia History: The Romanov Family – Insights From Historian Dr. Helen Rappaport

Insights from historian Dr. Helen Rappaport – NHF sat down with historian Dr. Helen Rappaport to learn more about how hemophilia impacted the Romanov family, and its lasting impact on world history. Read the interview transcript, or watch the video recording.

My name is Dr. Helen Rappaport. I have an honorary doctorate from Leeds University where I studied Russian. I’m also a fellow of the Royal Historical Society and I specialize in Russian history, particularly late Imperial Russia and the final years of the imperial family and Victorian era (the reign of Queen Victoria). I’ve written extensively on the Romanov family and the impact of hemophilia on the family regarding Aleksei Nikolaevich of Russia, who with his parents was murdered in 1918, in Ekaterinburg.

How did you become interested in studying the Romanov family?

I got interested in them quite late, really. I was always a lover of Russian history, but I never thought much about the Royal family and the aristocracy until about 2006-2007, when an agent I was then with suggested I write something about the Romanov family.

It hadn’t particularly interested me because I wasn’t really into Royals and palaces and all that stuff. But when I started looking at the Romanov family, I became extremely interested in the dynamic of their family life, including how they coped with having a hemophiliac son and having to hide that fact from public view.

How did hemophilia enter the Romanov bloodline?

Hemophilia is very particular to Aleksei in terms of the Romanovs because there hadn’t been any hemophilia in the Russian royal family until Aleksei was born in 1904. The disorder had been brought into the Russian royal family by his mother Alexandra, because her family had hemophilia transmitted to them via her mother, Princess Alice, who was the daughter of Queen Victoria.

Hemophilia came down to the Russian royal family by via the German Hesser family. In terms of the Romanov family, the most common misconception is that it was several weeks after Aleksei was born in August 1914 that the family discovered he was a hemophiliac. In fact, his mother Alexandra had lived in utter terror and dread of giving birth to a male child who would have hemophilia passed on to him.

When she gave birth to a boy after four daughters, it was no surprise I guess, to her and Nicholas, that their worst fears came true within hours of Aleksei being born, because he started bleeding from the navel. But all the history books — until I did my research — said it wasn’t known until a couple of months later, but in fact, I found evidence within family letters that, in fact, the baby started bleeding from the navel as soon as he was born. And the reason this happened was because there’s a tradition in Russian midwifery when a child is born, and they still do it now, I think: They swaddle the babies very tightly up like little packages. And the swaddling on Aleksei had been so tight that it had pressed on his navel, and caused bleeding at the recently cut umbilical cords. So, they knew straightaway these horrible telltale marks and a spattering of blood, that this might be the one thing, the one thing that they’d lived in dread off, which was the Coburg disease, the Hesser disease. In fact, it was often called the Coburg curse, because of the way he had come down from front through the German side of the family.

How did Hemophilia impact the Romanov family?

The minute Aleksei was born, and they saw that he had the bleeding disease — this dreaded bleeding disease — there was a total clamp down, they had to protect him, first, from any injury or accident that will cause bleeding, but also in the widest sense. It had to be a state secret, because in Russia, for the heir to the throne (as Aleksei was) because it went through the male line, he could not be perceived as being ill in any way. So, it was an absolute state secret that Aleksei had the condition. And Nicholas and Alexandra managed to keep it secret until 1912 when Aleksei had a profoundly serious attack of bleeding and almost died.

How did the Romanov family treat Aleksei’s hemophilia?

In 1904, hemophilia was little understood. The science wasn’t understood. There was certainly no treatment whatsoever for individuals with hemophilia, apart from lying them down, keeping them still, and applying ice in 1910.

Of course, one thing that unfortunately was wrongly considered as being helpful — because it eases pain — was aspirin. And one of the worst things, of course, you could do is give anyone with hemophilia aspirin because it thins the blood. And initially, Aleksei had been given aspirin. It was Rasputin, who told the parents immediately to stop giving him aspirin because that would only make things worse.

What was known about genetics in the early 1900s?

Alexandra was in denial that it might come through to her because they didn’t really understand the transmission of the disease, but she must have had it in the back of her mind, going through every single pregnancy until the child was born. And in that case, you know, the first four children they were all daughters, and she heaved a sigh of relief. But when Aleksei was born, she must have lived with a most terrible suppressed sense of denial, anxiety, dread, you name it.

I think the most interesting thing about hemophilia  in the Russian royal family, of course, is that first of all Aleksei had type B hemophilia, which was not as as bad as type A — he had what’s called Christmas Disease. Today, it would have been perfectly treatable, and he would have survived and had a happy life. But at the time, Nicholas himself in private conversation with doctors was told he’d be lucky to see the age of sixteen.

How did hemophilia in the Romanov family impact world history?

If Aleksei had not been born with hemophilia, there wouldn’t have been this need for secrecy. The throne wouldn’t been threatened because Alexandra wouldn’t have embraced the help and support of Rasputin, who was hated and demonized. In many ways, Aleksei’s hemophilia set the ball rolling for the fall of the monarchy, because Alexandra was so hated. And once she took on Rasputin as a friend and advisor, the chips were down because so many, so many people in Russia hated them both, and thought they were conniving and that they were spies.

And so, things could have been quite different if Aleksei had not been a child with hemophilia. And certainly, others were impacted, in terms of other royal families. The hemophilia was passed down completely unwittingly by Queen Victoria because it was passed down through her daughter Alice to Alexandra, and to Alexandra’s sister, Irene, who married the prince of Prussia and she had two hemophiliac sons. Queen Victoria’s youngest daughter, Beatrice unwittingly passed hemophilia down to Ina, who became queen of Spain.

In a way one could say hemophilia also helped bring down the Spanish royals because the queen had sons with hemophilia, both of whom died young. Her husband never ever forgave her. He blamed it on her, of course, as happened when people didn’t understand hemophilia or how it was transmitted. And they lost two of their sons to hemophilia as well.

But certainly, I think with in terms of the Russian royal family, there might have been quite a different story, if Aleksei had not been a hemophiliac. The two most interesting things that have come through since the discovery of the Romanov remains in the 1990s — and then subsequently, in 2007 — two of the children were missing and they found what was left of them. And so, they did very comprehensive DNA testing. And two things came out of that: First that Aleksei had type B hemophilia, which could have been perfectly treatable nowadays.

The second most interesting thing I think, from my point of view as a historian is that of the four girls, only Anastasia was a carrier. And the sad thing was that the elder two girls weren’t married off because the other royal houses of Europe were dreading having hemophilia brought into their families. And of course, if people had known that they weren’t carriers that might have, there might have been a different story there. Those two girls could well have been married before the war and escaped being murdered by the Bolsheviks. So that’s another big what if, of course.

What are historians still learning about hemophilia and the Romanov family?

One thing I recently found, and I was extremely interested to know more, but I couldn’t find very much was that I came across a Victorian article — it was written in about 1880 in an American medical journal – it said that there was a higher incidence of hemophilia in Germany. Queen Victoria’s mother was German from the Saxe Coburg family, as was Victoria’s husband, Prince Albert. So, I would love to know if anyone ever uncovers any more evidence or facts about hemophilia coming through somehow from the Saxe Coburg side. Again, it might have been a spontaneous mutation, but I would love to know more about that.

How can people learn more about the Romanov family and hemophilia?

My book, the Romanov Sisters goes into the whole story of the four girls who are very much marginalized. All the attention has always been on Aleksei and hemophilia, and Rasputin’s controversy, but in fact, those four girls were incredible support to their mother and their brother. They protected him; they watched over him when he was sick. When he had bled, they sat by his bedside.

Romanov Sisters is a study of the domestic life of the Romanovs. It talks in detail about the different the five pregnancies that Alexandra went through, her fear of hemophilia, and the reaction and the response when Aleksei was born and how they dealt with it, how they tried to keep it a secret, how they didn’t even tell their very closest relatives, even Nicholas’s mother and sisters didn’t know for several years.

If you want to read more about how hemophilia impacted them, it’s all in that book. And of course, I’ve also written on Queen Victoria and at various times and how hemophilia impacted her family. You can find out information about all my books and events at helenrappaport.com. I am on Twitter as Helen Rappaport and I do post regularly there about all my books and events. I also have a dedicated page on Facebook called “Helen Rappaport writer.”

Source: National Hemophilia Foundation

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