A doctor opens up about her heart for the first time
Sara Taher doesn't tell most colleagues or patients about her heart condition, worried they'll treat her differently. Now, she's ready to share.
Hello! I’m Leigh Kamping-Carder, and this is The Heart Dialogues, the newsletter for people born with heart conditions (and the people who love them). Every other week, I bring you a candid conversation with someone who has congenital heart disease, plus occasional essays, links, recommendations and other good stuff about living with a wonky heart. Add your email to join this community and ensure you don’t miss the next edition.
Sara Taher is a doctor. Her mother, father, brother and sister are all doctors. “All my life, I was looking to be a doctor,” she said. Her medical education and career have informed the way she thinks about her congenital heart condition—and vice versa.
Sara and her family are Egyptian, but she was born in Saudi Arabia, where her parents were working at the time. Her mother knew immediately that something was wrong, and Sara was diagnosed shortly after birth with tricuspid atresia, pulmonary atresia, a ventricular septal defect and an atrial septal defect. (That means missing tricuspid and pulmonary valves and holes between the wall separating the ventricles and the atria.)
She had a Blalock-Thomas-Taussig shunt at 40 days old, followed by a Glenn procedure at 4 years old and a Fontan at 8 years old. Sara has also had a series of cardiac catheters, starting in her first few weeks up until about two years ago. She has also had depression for the past 8 years—a condition that, she said, is often more debilitating than her CHD.
Now 28, Sara lives in Asyut, Egypt, where she works as a rheumatologist. Though she is open about her depression, most of her colleagues and patients don’t know anything is amiss with her heart. “That's why I did this interview,” she said.
Read on to hear about Sara’s rekindled faith, how her depression has affected her CHD and what it’s like finding a cardiologist in Egypt.
What was it like for you growing up with a congenital heart condition?
When I was young, I was really afraid of everything. My mom was overprotective, so she wouldn't let me play with other kids. I was afraid also to play with the kids because I was getting tired so easily. I felt really different in school, especially when I was in primary school. I was bullied because I was not playing and not running, etc. When I came back to Egypt here, I was 13 years old. I met a lot of good people here in school, and they were kind. Being a CHD patient—no one knows this during school. With me getting into adulthood, I became more open to it. I went to medical college. We see a lot of patients, so it was like, it's okay, I have a CHD, everyone is sick. It became something normal for me, maybe. I realized that nobody really cared that I'm sick or not.
Did you decide to go to medical school because of your CHD?
I came from a family of doctors. All my life I was looking to be a doctor. My sister and brother are also doctors. I really didn't think of anything else. But yes, having a CHD made me want to go to medical school to know more about it.
What was the cardiology care like in Saudi Arabia?
At first it was difficult to find someone who understood my condition because we were living in a small town, not like the capital. My mom and dad managed to communicate with doctors in big hospitals. In Saudi Arabia back in the ‘90s, it was difficult for non-Saudians to receive the medical care needed. So I went back to Egypt, but actually Egypt was not advanced in cardiac care at all. So we managed to reach an Italian doctor. He was coming to Egypt every three or four months to see kids having congenital heart defects. When he saw me, he decided that I needed to do the Glenn procedure in Italy, not in Egypt. So I went there. It was all by my family's money. Nothing was free. Then at 8 years old I did my Fontan in Saudi Arabia. We had something called a royal abatement from the Saudi government. We didn't pay for it.
You’re living in Egypt now. How is your cardiac care?
Because I am having a really complex condition, and the Fontan procedure is not done for many patients here in Egypt, it's hard to find a cardiologist that understands the condition, especially that I am an adult now. But I found [a congenital cardiologist] who was working in the U.S. or U.K. She’s a female doctor, and she's very amazing.
Was there a period when you weren’t seeing a cardiologist?
In Saudi Arabia, every year, even every six months, I was going to do an echo at the hospital and see if everything is okay. But when I came to Egypt, I spent four or five years without doing anything. But then we managed to find someone. Since then, I'm going every year, or actually, I'm kind of careless this year, so I go every two years.
How do you feel about not getting access to care?
I'm pretty okay. I don't take any medicine for CHD. I'm very normal. No one knows that I have CHD unless I tell them. I’m not cyanotic1 at all. I go, I play, I do everything like my peers. I go to work every day. I'm not thinking much about the future. Sometimes I get worried about my liver condition.2 I have some liver fibrosis. That's the thing that makes me worry: What if this fibrosis got worse, what I'm going to do? But hopefully if something bad happened I can go to the U.S. or U.K. or anywhere to find good care. As a doctor, I think I can do this.
Are you open about your CHD at work?
I'm not actually. Many friends know that I have CHD. My colleagues know not so much. I try to hide it sometimes because I feel afraid that they will treat me with apathy and “Oh my God, she's sick!” My school friends are my colleagues, like my college colleagues, they know. But my professors and my patients, no, they don't. That's why I did this interview because every year I am trying to publish my story to everyone, but then I feel really scared. So hopefully this interview will make me do that.
What do you think might change if people know that you have a complicated heart?
They may treat me with compassion and feel like I'm weak, I'm different, and that's going to make me really sad because I'm not different from anyone. I'm really smart, and I'm a really good doctor, so I don't want people to see me like someone beneath them. But also by experience, the people who knew really didn't care.
Can you tell me more about that—when you do tell people?
Most people I tell are also doctors because [of who I went to college with]. We see a lot of patients with many diseases—not congenital diseases, but they get sick when they are adults. And maybe they are more sick than me and younger than me. So, okay, everyone can get sick sometimes. It was like no reaction, you know? But sometimes some people also see me as a hero. I really don't know why. [Laughs]
Do you think of yourself that way?
No. No. I'm just someone who got sick, that's all.
What about romantic relationships?
I'm Muslim, so we do not have the boyfriend-girlfriend thing. I am single. Thinking about marriage makes me freak out because I worry about getting pregnant because this might make my heart worse. Now, I'm not thinking about marriage.
How do you feel about your scars?
I was a very shy child, so I was covering them. I have this scar on my wrist because of a cannulation gone really bad. I was hiding it by a watch or wristband or anything. I was wearing also long sleeves when I was a child. I really, really hated them. But now I don't mind them at all. Because I'm Muslim, I wear hijab, so they don't show at all.
You said that seven years ago you were diagnosed with depression, but now you are on antidepressants and in psychotherapy.
My depression is really connected to having a CHD because I felt really different. And sometimes I felt like the world is unfair and God is unfair. But that changed now. Now I'm close to God, and I'm thankful because I didn't really suffer so much.
How did you find a different relationship with God?
Because I'm a rheumatologist, I’m dealing with autoimmune diseases. Most of my patients are females and are young. I don't know if you know the disease called lupus.
I’ve heard of it.
It’s a very devastating disease. Some young girls may die of it. Every year I work, I know more patients with more severe things than me. I thank God that I was sick when I was just a kid. Now I am a doctor, and I am working. Other people my age are suffering. That's the main reason that made me more accepting of my CHD.
It’s a blessing and a curse that some of the worst stuff can happen when you're little.
A blessing, I think. Because I don't remember a lot of it. My adult life was nearly normal. Last year I did the first catheter in my adult life, and actually felt really okay. It was expected. I have done this many times before, so it's okay.
How have your parents reacted to your CHD?
They are the biggest blessing in my life because they understood everything from the beginning, as they are doctors. They understood what complications can happen, what is the optimal care for me. When I was a kid, I had oxygen in the home. I had all the medical devices I needed. It was kind of easy for them to deal with me. Also on the emotional level, they were very supportive. They didn't treat me differently from my siblings. Well, when I was young, they kind of treated me differently because I was sick. I was getting really tired very easily, and sometimes I just faint on things, and sometimes I needed oxygen, so they were overprotective. But now they are very supportive.
What else is important to talk about?
I want to talk more about my depression. It started about eight years ago because of stress. I was in college in the fourth year. We had a lot of studying to do, all the time. The stress just kept building and building. I started studying cardiology, I understood my condition more, and I felt that it's really a complex condition. I just got very overwhelmed and I got really depressed. Then I started having antidepressant medications, and they really changed my life.
People with chronic diseases, they have a lot of things that they can feel overwhelmed by, and they get depressed very easily. This should be considered by doctors. The adult cardiologist has to understand that we, the CHD community, have some psychological elements out of our CHD. Depression is something real. It is not just in our head. I am more disabled by depression than CHD.
Did you get any support from your cardiologists when you started to feel the depression?
Most people know that I am having depression and being treated. A lot of people don't know that I have CHD, but most people know that I have depression because it's kind of obvious. I go to psychotherapy. I feel really supported in this matter. My family is really, really supportive.
Both of those issues feed into each other. If you're depressed, it's harder to take care of your physical health; if you have CHD, that can make the depression worse, I would imagine. It seems very challenging.
Yeah. And also sometimes the childhood memories of surgeries and procedures, they just come to me and I have a PTSD thing. That makes it hard. And also it makes it hard for me to deal with child patients because I feel really sorry for them, and I understand that they are suffering, and sometimes it feels unjust, unfair. That can trigger my depression or PTSD.
Have you seen any positives from having CHD?
It’s made me more sympathetic with my patients because I know what pain means, what the procedures mean, [having] a lot of [lab tests], I know all this. It made me more connected to them. I have another thing to say. I just want everybody to know, especially in the CHD community, especially mothers having a kid with CHD, it’s a long and tough journey, but it can be a successful journey. It’s not a CHD that defines me or anyone. I define myself as a successful doctor, not a CHD patient. Having a CHD didn't prevent me from doing everything I want. I studied what I loved, and I became a doctor as I wished. I see myself as a successful person, and it's totally not related to being a sick patient, a sick kid.
Interview has been condensed and edited.
A blueish tint to the skin, lips and/or fingernails caused by low oxygen in the blood, common in people with some heart conditions.
Another fun heart thing! Fontan-associated liver disease is… pretty much what it sounds like.