Congenital Heart Disease in the USSRSep 2016
I recently had heart surgery to fix a leaky mitral valve. When investigating my condition and the surgery online, I found individual people's accounts of their progression to be most helpful to understand what I'll be going through. These accounts are unfortunately rare -- they mostly seem to crop up in individual posts in random forums in the dusty corners of the web. I plan on documenting my full journey once I've made some additional headway in my recovery.
However, this was not my first experience with heart problems. As an infant, I was diagnosed with coarctation of aorta and was the subject of the very first balloon angioplasty performed on an infant in the USSR. While I had heard bits and pieces of the story over the years, my parents' coming to stay with me during my recent recovery was a great opportunity to hear the whole thing. I took notes!
This is my parent's account of that adventure. I obviously find it autobiographically fascinating, but I think it might be interesting to other readers as well. I especially found insights into the functioning of the Soviet medical system enlightening. Read on, if you care!
In 1984, when I am about 6 months old, my mom takes me to the local regional hospital in Nikolayev, Ukraine. She is concerned because she had performed the (I think?) Barlow maneuver, but could not get my hips to lay flat as they're supposed to. In the hospital, the doctors get an X-Ray, but see no physiological pathology. Instead, they suspect a neurological problem, and so refer her to a neurologist.
My family was well-known in the medical community of Nikolayev. Both of my mom's parents were pharmacists in a country with chronic shortages of critical medication. If you were sick, it definitely helped to be on my grandparent's good side, and so they were owed favors by many people in town. This fact helped my mom and me to quickly be seen, first by the on-duty physician who did the X-Ray and then by the neurologist.
Additionally, a decade before this story begins, my cousin Boris was born to my mom's brother and his wife. Boris and his mother had incompatible blood types. As a result, Boris was born with jaundice, but the cause was not diagnosed and his condition was allowed to progress until he suffered brain damage. Boris remains severely handicapped today.
So, when my mom and grandma show up at the neurologist office, they are quickly recognized. It takes only a minute for the neurologist to make her diagnosis. "You understand that I can't write you a prescription for these, but I'll give you a list because I know you can get them," she says to my grandmother, handing her a long list of medications. Her diagnosis: hydrocephaly.
At home, after looking up hydrocephaly in the family encyclopedia, my mom has a mild nervous breakdown and stops producing breast milk. My dad's mom Anika, also a doctor (of optometry), is dispatched from nearby Kherson to come provide moral support. It is mid-spring -- a cold, rainy time -- and on top of my hydrocephaly I have picked up a cold. Anika tells my mom to chill out about the hydrocephaly, but to be more concerned about my cold progressing to pneumonia.
The on-call physician at the local clinic is summoned for a house call -- typical for the USSR at the time. "Mamochka, why did you call me", he asks. "Well, the weather is cold, the child is sniffly, we were worried about pneumonia," says Mom. "Nah, he doesn't have pneumonia," announces the physician. "He has a congenital heart defect."
At this point, I've been diagnosed by roving bands of doctors to have pneumonia, hydrocephaly, and a heart defect. Everyone is freaking out. To instil calm, my mom calls the father of her best friend, Issac Issacovich, who is one of the most well-regarded cardiologists in Nikolaev. His opinion is that the on-call physician is a dick. "Yes, he has a murmur, but that's common in infants," he says. "You need to wait until he's at least a year old. If the murmur persists, then we can investigate further".
My heart murmur persists, and so my family is referred to doctors in Kiev who may be able to diagnose the cause. Kiev is no Nikolayev (a regional back-water), but my family is still well-connected there. Antonina Grigorivna, a good friend of my grandfather, is the head of the 4th Municipal Pharmacy, which served the Communist Party apparatus of Ukraine -- the party bosses and their families. As a result we are able to get an appointment very quickly, and the doctors in Kiev perform an ultrasound -- the first I'd had at that point! (Aside: In the US at that point, prenatal screening with ultrasound was routine).
The ultrasound allowed the cardiologist in Kiev to definitively diagnose me with coartation of aorta. However, surgeries to fix the condition were not performed anywhere in Ukraine. Using our connections to Antonina Grigorivna, my parents are able to secure a referral from the Ministry of Health to the main Soviet hospital in Moscow. It is late fall, and nobody wants to travel to Moscow for the full winter experience, so my family makes plans to go there in the Spring.
In the spring of 1986, my mom, along with my dad's mom Anika, fly to Moscow and take up residence at my aunt's house. Her hard-won referral from the Ministry of Health in hand, my mom shows up at the hospital, and attempts to make an appointment to see a doctor. She is rebuffed at the reception. "Why are you here?" asked the woman behind the counter. "You should have mailed us the referral and waited for us to summon you."
The next day, my mom purchases a fancy chocolate bar in a Moscow department store. Over the objections of my grandmother and my aunt ("We have never done such a thing, and never would!"), she puts a 50-ruble bill inside the wrapper. The median monthly salary in the USSR at this point is around 75 rubles. Unsure of herself (because she has always just gotten by on family connections), she shows up back at the hospital, confronts the same receptionist, and slips the chocolate and money into the front pocket of her white coat. Now, the answer is "I'll see what I can do."
The cardiologists in Moscow perform a doppler echo, and confirm that I definitely need surgery to fix the coarctation. They schedule a date to admit me to the hospital. However, in the chill of the Moscow spring, I get sick again. My family and the doctors decide that I should come back to Moscow in June, when I am feeling better and the weather is improved. We fly back to Nikolayev from Moscow on the infamous date of April 26th, 1986.
Back home, my family begins scheming for how to get me the best care during the surgery. Invoking the extended family network, they involve Aunt Lora. Lora is both my grandmother's cousin, and also my grandmother's brother's wife's sister in law. It gets better: Lora's childhood friend lives in Moscow, and is neighbors with the mother of Gennady Khazanov, a famed Soviet Comedian. Khazanov's mother is friends with the family of Professor Falkovsky. I was able to find a reference to Falkovsky as the "director of the cardiosurgery department at the Soviet Academy of Medical Science."
So, when my mom and I show up in Moscow in June, we have at least some tenuous connection to the people at the top. I am immediately admitted to the hospital. There, using some newly-purchased markers from my mom, a girl in my ward and I cover each other in little red dots, creating a chicken pox scare. The nurses demand payback of the half-litre of medical-grade ethanol they used to wash the dots off us (remember, people drink this stuff straight!)
That night, the Soviet surgeons perform their first balloon angioplasty on an infant. Rather than using the femoral artery, as is common for adults, they gain access via the brachial artery in my left arm. After the procedure, they accidentally suture closed the artery, cutting off blood flow to my left arm, and send me to recovery.
The next morning, Professor Falkovsy and Dr. Leo Bakeria (apparently, Russia's chief cardiologist) make the rounds of the hospital. I had been complaining of arm pain all night -- my earliest memory may be of standing in my hospital bed with my arm in pain, trying to get the attention of a doctor through the glass door. However, the on-call doctors don't realize that anything is wrong. Thankfully, the two chief cardiologist recognize the problem with my arm, and proceed to raise hell. By the time my mom arrives in the hospital in the morning, I am already in surgery again. Dr. Bakeria re-opens my incision, cuts out the dead portion of the brachial artery, and connects the two remaining sections together to save my arm.
I am transferred to the ICU. Mom shows up there with Aunt Lora, and they bribe the head of the ICU (Dr. Yuri Buziashvili) 200 rubles more to ensure quality care. My dad was already planning to come to Moscow, but my mom calls his boss at the ship-building plant, who puts him on the next plane. Because in the USSR, family is not allowed to visit in the hospital, Mom enrolls temporarily as a hospital worker so she can spend time with me while I recover.
Although gangrene starts in my arm, it slowly recovers. I lost a lot of range of motion in it -- for instance, when crawling I kept the left hand balled up in a fist. To help in the recovery, Prof. Falkovsky connects my mom to a woman named Valentina Nikolayevna. She is a neurologist, but she also practices alternative medicine -- probably not legal, but she has cover from her husband, a KGB officer. I spend many hours at her apartment in Moscow, getting acupuncture. My reward for good behavior during the treatment is to play with her son's remote-controlled waking robot, a toy light years ahead of anything I had access to.
In the end, this is a happy story. Thanks to my family connections and a bunch of money, my coarctation is fixed, and I am able to grow up normally. Even my left arm is not much of an impediment.
The hero of this story is my mom. It couldn't have been easy to deal with all the doctors, or to travel around all over the place with a child, bribing every other person. Her dedication saved my life -- thanks, Mom!