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Sisters: Connected by the Heart

Context: I'm the little sister. I was diagnosed with atrial septal defect (ASD) at 7 years old. It's a hole between the left and right atria that is important for circulation before birth, but is supposed to close after a baby is born, but mine didn't.  I didn't have any symptoms, but my Grandpa had a different genetic heart condition and they were screening all of his grandchildren for it when they found mine. I had surgery right after my 8th birthday to repair the hole. I loved medicine even then and thought the whole thing was incredibly cool. I loved it so much I went and became a doctor. Health-wise, I don't have any long-term effects of the defect. Unlike Emmy's, my problem was simple enough that one surgery completely and permanently fixed it. I hardly ever think about it until someone asks me about my scar. It's a very, very different experience. Growing up with a sister with a severe CHD has probably affected me more than my own CHD did. On paper it didn't affect me since most of the crisis and surgery happened before I was old enough to remember, but in reality it did, sometimes in a good way and sometimes not.

What do you remember about watching your sister live with a heart defect?   Emmy's heart condition has always been a part of my life. She's been dealing with it since before I was born. I only have vague memories of her 3rd surgery, which may actually be memories I created after the fact since I've seen pictures.

I remember a lot about growing up with CHD. I remember my parents had told me that Emmy gets tired easily and so we had to keep an eye on her and help her when she needed it, and let her rest when she needed to.

As a little kid, the world revolves around you in your own mind, and so my experience of Emmy being sick was largely based on how it affected me.  I have a lot of memories of times when I wanted her to be able to play with me but she was tired. I wanted to run around but she didn't. I wanted to climb things but she was having a hard time. I wanted to stay up late but she wanted to go to sleep. I was the only one pedaling the two-person bicycle around the yard. I carried my sled and hers back up the hill. I wanted to race around the house but she wanted a head start because she knew she wouldn't be able to keep up. At times I was disappointed. I wanted her to just power through and play with me! But she couldn't.  I knew it wasn't her fault so I wasn't mad at her, but it was frustrating nonetheless. I remember consciously deciding that I was going to be strong and always power through and never need help.

As I got older and developed a sense of compassion (ha!) and awareness of other people, I started to see how it disappointed and frustrated her to not be able to do those things too. And then I felt bad, and then I was probably nicer to her about when she needed a break.  I started to watch out for her and feel very protective. I decided that I was going to be the strong one and be the one to take care of her, and compensate for her by not having any of my own weakness and not needing to be taken care of.  (If you know me, you might argue that I've taken that idea to an extreme and maybe I need to let up a little... and you would not be wrong.) That's probably why a lot of people thought I was older than her. (Also I am taller. Turns out having enough oxygen is good for you when you're trying to grow.)

Many, many times I have wished that I could do something to help her. I've wished I could make it easier for her. Or taken over blood oxygenating responsibilities for a little, just to give her a break. I've wished that I could trade bodies with her for a few minutes, to give her a taste of what it's like to run as hard and fast as you can and gasp for air in an exhilarating way, not in a painful or scary way. I've wished God would heal her. I wished she didn't have to deal with trying to decide whether it was smart for her to keep playing soccer past 3rd grade. I wished she didn't have to fight to be allowed to be the one to say when she could or could not play in gym (it was easier for them to just say "no"). I wished I could go watch her play at sporting events instead of her always watching mine. I wished she didn't have to come to terms with her limitations. I wish she didn't have to learn how to speak up when she was having a hard time keeping up with a group of people walking.

But I also wish that I had her compassion. And her ability to connect with people on a deep, human level. And her patience with other people's struggles. And her ability to shoulder the full weight of hers and other people's feelings and carry them all. And write birthday cards that invariably make my dad not just cry, but weep, as he says. So a functioning right ventricle and a tricuspid valve aren't everything in life.

What were your thoughts when you found out you also had one?  Were you scared by the diagnosis?  Scared by the thought of needing an operation?   Honestly, I thought the whole thing was really cool. I was already really fascinated by hospitals and medicine. Whenever we'd go to a hospital to visit someone I'd be craning my neck into all the rooms to see if anyone was bleeding or having surgery done right there (Spoiler: they never were. I did not understand how hospitals worked at that time). I would have bee happy to be numbed from the neck down and watch my own surgery. I remember we went to lunch at a diner after the doctor appointment and my mom asked me if I was scared. I think I said yes because I felt like I should say yes...but I don't remember feeling much of anything. I was just like "okay do what you need to do", I'm sure I'll be fine. I know open heart surgery is a huge deal for most people, but because I'd spent my whole life hearing about it, it seemed like a normal part of life. When my brother turned out to not have a heart defect I thought "Huh. Weirdo".

Did you ever worry you would struggle in the day to day like your sister did?  Not really. I think because I was completely asymptomatic before, I figured it couldn't be that bad. The surgery was going to fix a problem I didn't even know I had. I was most worried about the couple of months afterwards when I had been warned I'd have to "take it easy" while I was "recuperating". I was not excited about not being allowed to run around. I knew that was going to be a problem. What do you remember about your surgery and hospitalization? I remember when the anesthesiologist came to tell me how he was going to put me to sleep. I remember taking a bath the night before with some special antibacterial soap, and my mom said , "Look, this is the last time you won't have a scar.", so I looked and was like, "Okay, noted". I remember I took some pill, laid down, and when I woke up I was in the ICU watching Disney movies. I fluttered in and out of sleep. When I fully woke up, I'm told that the first thing I said was asking my mom if I could watch a video of open heart surgery that she had. I hadn't been allowed to watch it before the surgery because my parents thought I'd be scared. I was so mad at them for not letting me. I'd tried to sneak into the room while they were watching it but it hadn't worked. So that was my first request post-surgery. I remember that everything was achy, and every time I wanted to move at all there were like 3 people needed to move all the wires and tubes coming out of me. I remember I hated sleeping on my back, but I was not allowed to sleep on my chest. They gave me a heart-shaped pillow to squeeze whenever I had to cough or laugh or take a deep breath, which helped a LOT with the pain of those movements. I remember my cardiologist came in and told us he was going to go to Boston soon to see them do the surgery I'd just had, without having to crack the chest open. I thought that would've been nice!

Was there anything that helped you push through the pain of recovery? The heart-shaped pillow was (practically) the single most useful thing!  But on a human level, having my people there was really important. I was not in pain so much as I was frustrated and bored. I was a pretty hyperactive kid and to be unable to get up and do whatever I wanted, and to be cooped up in the hospital was driving me crazy. A ton of family and people from church came to visit, which was a very welcome distraction. I still have some of the gifts people brought me. I remember my dad taught me how to play solitaire on his computer to pass the time.  I also had a really nice flare of middle child syndrome and enjoyed having my parents all to myself for the large part of a week while my siblings spent most of their time with family.

What was it like going to back to school only a few weeks after your surgery?  Did you find it hard to adjust to being unable to do things for yourself in the first few weeks and months after your surgery? I remember my mom brought me to talk to my teacher before school started to just let her know that I'd just had surgery, etc etc. I did NOT like being singled out. I wasn't supposed to carry my backpack by myself and I wasn't supposed to go to recess. This was a big problem because I was also very used to being the competent, strong one that did the taking care of. I was not happy about being taken care of. I am sure I did a lot of things I was not supposed to be doing myself in order to avoid that. Who am I kidding...I was definitely, frequently in violation of the rule of no strenuous activity. I do not handle being told to stay in one place very well. I used to run around to the side of the house where my mom couldn't see me and do cartwheels that I was not supposed to be doing. It was thrilling...partly because I love doing cartwheels and partly because I have a little rebellious streak. What can I say, it seems to have turned out fine? One of the great things that came out of that was how I spent my recess time. I spent every day for a couple of months hanging out with one of the librarians, Mrs. Libutti. We literally just sat around and did puzzles and played games and read books. She was lovely. I was probably really cranky about not being allowed to go to recess, but she made me have a good time, and we became friends. At what point did you feel "healed" or well again? The first time I tried to sleep on my stomach and it didn't hurt, I was ecstatic. I really hate sleeping on my back and it was magical. Simple pleasures. As an adult, do you ever worry about your CHD affecting your life now or in the future?  I met someone one day who told me that she'd had the same problem as me, and her ASD re-opened like 12 years later. So that freaked me out a little bit. So I went to get an echo just to make sure, and it was fine. Phew. 

I think about the possibility of one of my kids having a CHD. It's not something I really worry about; I don't usually worry about things until they're right in front of me, and that's a while away.  But there's a higher-than-normal chance given the two CHDs in my immediate family. At that point I will have really awesome guidance from my parents who have dealt with having a CHD kid, and a sister who has dealt with being a (real) CHD kid and hopefully they will give me good advice. ;)   I worry more about Emmy's CHD affecting my life, and hers. Is she going to be able to have kids? Is she going to live as long as me? Those are sobering thoughts, and also I can't do much about it, so I try not to sit too long on that. God is in control and we will deal with whatever comes. I have no choice but to trust. How do you feel that having a CHD has impacted or changed you? I think it did a lot for pushing me in the direction of medicine, as a career choice. It made me really good at the cardiovascular unit in many levels of school because I already knew all about the heart, and the different congenital heart defects. Emmy's more than mine gave me perspective about how chronic diseases have such a huge, deep impact on not just the patient dealing with them, but also their family.  I think that was really helpful in medical school. How do you feel sharing the experience of CHD with your sister? I like that we have matching scars. I feel like I can't really compare myself to Emmy though because my CHD basically went away right after I found out about it. It hasn't limited me, and I haven't had to come to terms with it like she has. I got the "lite" version. What advice would give you someone who is experiencing a similar journey as you?  Oh I don't know. Get an echo to be sure your ASD hasn't re-opened. 

But seriously, I think the thing I most needed to learn (I think this might just be my personality) was that it was okay for me, as the CHD sibling in this case, to not always be the solution to Emmy's problem. They didn't all need to be solved, and not by me. And that I was allowed to have problems too, and it's okay that everything isn't always okay.

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Feb 18, 2020

Loved hearing your perspective as the sister and patient from my perspective as Parent. What great kids I have, and I did nothing to deserve any of you! Thanks for sharing!!! I love you both!

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