boy with scars after heart surgery

Is he fixed? That’s the ongoing question we get when someone we know asks about our son Elijah’s heart condition. The simple answer is no; he is not “fixed.” He will never be fixed. He was born with a congenital heart defect (CHD) called Tetralogy of Fallot. You cannot just “fix” a congenital heart defect.

When Elijah was born, his heart wasn’t functioning properly due to structural abnormalities. There were four in total. You can correct them, but you can’t fix them. Elijah will always be under the care of medical professionals, and he may need more surgeries. In fact, it’s highly likely he will.

Yes, he may look well and happy, but no, he is not “fixed.” You cannot “fix” a heart. His heart — no matter how many surgeries — won’t be the same as someone who wasn’t born with CHD. It won’t work like it either, so please stop asking us. It’s just an ongoing reminder that my son has a heart condition that will affect him for the rest of his life.

I appreciate those who take an interest in Elijah’s condition and ask questions. I’m happy to educate them about his condition. But please choose your words carefully. As the parent of a child with CHD, I’ve spent days upon days wishing there was a way to “fix” my son. It’s just a kick to the stomach that no, I can’t fix him. No one can.

To be a parent, you should be able to do whatever you can to stop your child from being ill, from hurting and to make them better again. I couldn’t do this, and it added to my guilt.

Elijah was very lucky. In the first hours of being born, he had “dusky episodes,” where he went blue/purple for a few seconds and then back to normal. He only ever had one episode at home, which was due to bronchiolitis.

Elijah looked like any baby of his age, and he didn’t get ill that often, either. Of course, it made me slightly more protective, and we kept him in our room until after his operation. I didn’t put him in nursery or leave him with many people. Immediate family and friends were briefed on what to do if Elijah had an episode, but truth be told, it never happened. It wasn’t until after the operation that I realized the difference his color. He was pink and healthy. It was almost instantaneous.

The operation patched the hole in Elijah’s heart, but unfortunately the narrow valve couldn’t be saved and was removed and replaced. And some of the thickening muscle was cut back. Depending on how he grows, Elijah may need more surgery to replace the valve again. So while he may be repaired for now, he isn’t “fixed.”

I find it hard as a heart mom to both appreciate someone’s concern and then not be offended by it. But I do resent being asked if he is “fixed,” as if he were a faulty electrical appliance that has been sent away to be repaired. He’s a little boy, not a vacuum cleaner, and has a lifelong heart condition that can’t be fixed. CHD will never go away.

I like to think of Elijah’s scars as a mark of the amazing journey he’s been on. His heart is a patchwork of strength, but it does always bring me back to the realization that he has CHD. No matter how many good days pass (appointments have been reduced to just once a year, and he is passing reviews with flying colors), he still isn’t “fixed.” He never will be. So before you ask, please stop and think about what you are saying. There are so many other ways to ask, and so many ways we as heart parents can answer.

To make everyone more CHD aware, we need to make it more accessible. Let’s talk about it. Start a conversation and begin to educate others about the effects and symptoms of CHD.

We also need to make it known what not to ask. After all, this is our lives as heart families, and we have a right to voice our opinions about the one subject matter that we will be talking about for the rest of our lives.

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Being a parent to a Heart Hero has been not only heartbreaking but equally rewarding in its own right. We’re never really fully prepared for those words:

“There seems to be something wrong with your child’s heart.”

One might never be fully prepared for what lies ahead for a Heart Mum/Dad. Dreams may seem shattered for a child you so badly wanted, the future you saw for your child was a care-free one, yet your left to face the battles of congenital heart disease. And in those moments you crumble because what “should” have been has now become what could have been.

Countless hours are spent in hospital rooms that in the end become your second home. Medication, doctors, surgeons, nurses and all things medical become a way of life, yet we somehow over time become accustomed to it.

Many times we wish we could take our children’s places. We want to ease the pain and burden of what may lay ahead for them as they silently fight to stay alive.

At first we are unaware of just how strong our children’s journeys as Heart Warriors has made us. We keep on going, we keep on living, we keep on striving because we were given a greater purpose: to be strong for them when we ourselves are weak, to advocate and be their voices when we sometimes can’t find our own voices, to never stop believing that they will live a life filled with endless possibilities.

Yes, our lives may seem a bit harder at times. It may look overwhelming, and it may even scare those who do not fully understand what we go through, but we are endlessly happy none the less. We are grateful to be able to be parents to our kids, to be able to take them to school, to kiss them goodbye, to see them have their first crush, but we are even more grateful that we get to have them in our lives at all because we know just how fragile their lives are.

As a Heart Mum of almost 13 years, I’ve felt blessed beyond measure to be able to watch my son grow into the young man he has become. I treasure every moment,  every smile, every tear, every fall, every steady heartbeat, every doctors appointment and every year that passes because I know nothing is guaranteed. I allow myself to live in the moment and savor every minute I’m able to watch my son grow.

I’m certainly a stronger person because of my son’s heart condition, and it has forever changed my perception of how life is meant to be. I’ve learned to accept what I cannot change but to also embrace what I can give my son, and that is to travel this heart journey with him every step of the way.

Being a heart parent is by no means easy, but it us one of the most rewarding journeys I’ve embarked on in my lifetime, and I’m always ready to take on whatever may lie ahed for myself as a heart mum.

To my fellow heart parents: You are strong beyond measure. You possess a remarkable strength within yourself, and there is nothing that you cannot face. Embrace that you are doing the best you possibly can do, and in the end that’s all that matters.

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Thinkstock photo by Dragon Images

How many times have you heard someone tell you to be your own advocate? But it seems that is all they say. There’s no how-to list or suggestions — just that confident statement that seems like it should mean so much.

How would one even begin to understand what that means without firsthand experience? It can be the most difficult part of being someone with a chronic illness. Unfortunately, our medical system gets harder to navigate by the day, and just when you think you have it all figured out, you will hit a new roadblock.

Being born with a congenital heart defect, I began to learn the meaning of being a self-advocate at a young age. My father is a doctor who always helped me understand the complexity of my disease and how to navigate the medical world, and my mother always encouraged me to be the one to communicate with my doctors and to learn more about the hand God had dealt me. With their assistance, I began to build my toolbox that has carried me throughout my life.

When I was in kindergarten preparing for my third open-heart surgery, my mother, prompted by my inquisitive nature, taught me everything that was wrong with my heart using the walls and interior doors of our house and red apples and oranges. With some fruit and doors, I learned what Tetralogy of Fallot was and how it was different than a normal heart.

The red apples represented oxygenated blood, and the oranges represented deoxygenated blood. With the pocket doors within the house, she showed me where the blood flow was restricted and where the holes in my heart were causing my oxygenated and deoxygenated blood to mix. By just changing the positions of doors and walking the fruit through the house, she showed me everything I needed to know.

I think the picture below sums it all up. This was at one of my pre-op appointments at  5 years old. You tell me who teaching who. I was well on my way to advocating for myself.

boy explaining his heart disease to others

Months later, my heart healed beyond anyone’s dreams, and I told my parents of my wanted to play sports. They said to ask my cardiologist. He was a little taken back, but he said if I passed a stress test, I could play certain sports. That confidence to challenge my doctors taught me that medicine is an art just as much as a science, and over the years, I have come to understand that even the best doctors can only be masters of their craft with patients who are honest and compliant.

These are my 15 lessons I started learning from the age of 5. This list represents 29 years of lessons of how I learned to advocate for myself, and I hope you find them useful, too.

1. Communication.

Effective communication is essential. Write out a list or a letter that includes all your questions and symptoms and take it to your doctor’s appointment to ensure you cover all issues.  

2. Honesty.

Be honest and answer every question as best you can. Don’t tell the doctor what you think they you should say or what your lifestyle should be. Your story is the key to a new diagnosis or your continuing care. Putting your story together is the art of medicine. When we smudge the truth, we are smudging the artist’s canvas with unknown consequences.

3. No secrets.

Tell your whole story. Don’t leave out a symptom because you think it’s inconsequential; that one symptom may be the one clue that finishes that canvas. Let the doctors determine what pieces fit where.  

4. Self-education.

Understand your disease the best you can. We often get caught up in the symptoms, prognosis and treatments of our disease, which are all important. But for long-term care, understanding the relevant anatomy, physiology and terminology will help you better understand your disease and improve the communication between you and your doctors.

5. Understand the answer.

When you don’t understand something, stop and ask for clarification. Some doctors love to speak in complex medical terminology, which is a great opportunity for you to learn more if they follow it up with a simple explanation. But if they don’t, stop them and make sure you understand everything they’re telling you. That’s why you’re there.

6. Ask the right question.

If you aren’t getting the answer to your question, you may not be asking the right question. The answer often lies in the question, take a step back and think about a new approach, keyword or fact that you’re missing. Asking the right question is as important in communicating with your doctors as it is when researching your disease and treatments.

7. Don’t settle.

You know your body the best. If you feel like something isn’t right, don’t settle until you have an answer. Sometimes that answer maybe “we don’t know,” which may be a reality depending upon your disease. That is your chance to determine if you want a second opinion.

8. Challenge your providers.

Challenge, question and make suggestions to your doctors. You’ll be surprised how often they will be receptive to your insight if you have done your research and communicate in an efficient manner. It may be a change of medication or your entire course of treatment. Don’t always take their answers as the end all be all. Work with them to get what you need and question them when needed.

9. Key player.

Know the one provider you can call when you need it. It may be any one of your doctors, a nurse or program coordinator. As you build your team, know who you can count on when things aren’t getting done or if you’re in desperate need of help.

10. Learn from others.

Find other patients with your disease. They will open your eyes and make you not feel so alone. You’ll learn from people who have already gone through what you’ll be experiencing and gain insight into the answers that worked for them. Finding these resources will help you ask the right questions, but just as importantly, it will help you mentally as you navigate life with a chronic illness.

11. Research with pessimism.

The internet is full of good and bad information. Find out which sources provide real data and information that can help you make an informed decision and formulate substantive questions. Most importantly, know when to walk away. When you get overwhelmed, turn off your computer and call it a day — or maybe even a week.

12. Be persistent.

You didn’t hear back from your doctor? Well, call again and again. Keep at it. Find an email address or another form of communication. It’s your health and your life — take control.

13. Get what you need.

Never be afraid to change your care. You may feel the need the switch care but may also feel guilty leaving your doctor. But you don’t owe them loyalty if you don’t feel comfortable with them or think they’re not helping you the best they can. And make sure it’s them and not you because nobody will be able to assist you if you are the source of the problem.

14. Don’t run out the door.

Always leave your appointments with a follow-up scheduled and all referrals and labs in hand even if they’re in another office in the same facility. We assume electronic medical records have made these things seamless, but they often make them more complicated. There is no substitution for a hard copy — paper is still king.

15. Don’t fall into the feel-good trap.

If you have a chronic illness, get as much accomplished with your medical providers while you feel good. You are patient for the clinical setting, not the acute care setting. You may get stable in the hospital, but your long-term success depends upon you seeking treatment and attention when you “feel good” from the specialist who has time to help you develop a long-term plan and dive into the details of your case.        

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Lead photo by Thinkstock Images

The opportunities are endless with my chronic illness.

My not-so-average body is actually my greatest gift. Think about that – someone’s imperfections can somehow help them in life and make them appreciate things that little bit more. The strength I have, some of the friendships I have made and my passion have all come from this wonderful opportunity I have been given: to look at life from a different perspective and teach others about what I can see through the eyes of my illness.

three friends in matching maroon shirts smiling backstage during a film shoot
Katy shooting her film with friends

Instead of sitting down feeling sorry for myself and dwelling on my chronic illness (Scimitar syndrome – a rare congenital heart defect), I have really pushed my limits and stretched myself so I can get as much out of life as possible. I have fundraised for a hospital’s charity, I have made a film with the charity Fixers to show that illness should not stop you from achieving and I have been part of a couple of campaigns. So thank you, Scimitar syndrome, because without you, I would not think of doing this. I would not be aware of how much funding hospitals need to get the best equipment to treat their patients. I might not have been aware of how young people need support when transitioning from pediatric to adult hospital services and I might not have known how much people can take life for granted.

I don’t want people feel sorry for me. I want people to allow me to tell my story – to educate and teach them about the side of illness they don’t know about. How illness should not mean you cannot be part of society and how illness does not define who you are, because if you want to achieve and do things you enjoy, stay determined, grab every opportunity and you’ll go far.

So thank you, Scimitar syndrome, because I cannot wait to see what happens next in my journey. You have made me passionate about helping others and spreading my positive message.

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Dear Parents,

I tell you this with all the faith in the world: you will get through your toughest days, because I have lived it. Despite having focal seizures from an active brain bleed, I had my first surgery at 54-hours-old because my heart couldn’t wait any longer. After my first surgery, I had a massive stroke and lost 40 percent of my brain. To say my prognosis was dim would be a gross understatement. I had emergency surgery at 9 months old, only because my parents trusted their gut and made the 3-hour drive to the hospital. It repaired an aneurysm that had formed in the patch used to open up my pulmonary outflow tract from my first repair.

When I was 6 years old after my third open heart surgery, I called my cardiologist wanting to play sports — the last thing they ever expected out of me when I was born or even months earlier, for that matter. But I played baseball and soccer as a goalie throughout high school, graduated college, ran for elected office, and have began submitting my applications to graduate nursing school programs.

Joe with his father at his college graduation
Joe with his father at his college graduation.

Where I am now is quite a juxtaposition to where I started. So, when all the chips seem down, keep your faith, there are too many that have defied the odds and become so much more than a congenital heart defect diagnosis. As children, we need your hand and strength more than you will ever know. In the end, if you did the best you could, when we are old enough to spread our wings, we will become more than you ever dreamed. One day we will be educating you on the disease you once advocated so hard for on our behalf.

You have the ability to lay the groundwork for us to thrive in all aspects of life, so here’s what I’d like you to know, as someone who was born with a congenital heart defect and has lived to tell the story:

1. When I am a child, you often represent me. Advocate for me, and know what is best for me and what isn’t. Always trust your gut.

2. My potential in this world is far more than you ever dreamed when you first received my diagnosis.

3. Your strength and faith are my strength and faith; I can feel it even when you think I can’t.

4. Help me focus on everything I can do. Let the doctors tell me what I can’t do. For everything I can’t do, there are a thousand things I can.

5. Build your team, our team. You can’t do it alone, and I don’t want you to.

6. I don’t expect you to be superhuman, I just want you to be my mom and dad. I expect you to get emotional, exhausted and scared.

7. Speak my name and tell my story. I will learn to tell my story by hearing you tell it first.

8. You will not always be by my side, teach me and show me how to advocate for myself. It will be my biggest tool for a healthy life.

9. You will see me endure things you could have never imagined, but the strength we will develop from those experiences will last a lifetime.

10. There are so many beautiful people who have worked hard to get me to where I am. Show me and teach me how I can help others who need me from an early age.

11. If God calls me home before you, know that I will always love you and we will forever be together.

My heart aches for all those who have lost the battle with congenital heart disease. For all those still fighting, we must keep the faith, stay strong and always believe there will be a better tomorrow.

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A doctor recently described me as an “enigma.” I think he meant it as an endearing comment, but I took it as a compliment regardless. I was born with congenital heart disease. My heart has a number of defects that are rare and very complex to treat. From a young age I lived with the prognosis that the condition would quickly erode my capacity and that a heart and lung transplant would eventually be the only long-term solution.

My chronic illness has meant that fear has never been very far away. I write this from my hospital bed, cautiously hopeful that I am on the other side of an episode where fear has never been more powerful. Still feeling fragile and very much questioning the strength and sustainability of my body, I’m again reminded how much of an impact fear has on our resilience and well-being. 

Luckily, I married a wonderful woman who has stood by me every step of the way. I have traveled abroad and have also built a career as a youth worker, counsellor and teacher. Through my work, I have had the privilege of meeting some extraordinary people and witnessing some incredible acts of courage. In many ways, I am grateful for my chronic illness because I wouldn’t have become the person I am without it. But with these stories of success and pride, comes the inevitable struggle that runs parallel to it. The times of crisis, the secondary illnesses, the many seemingly endless bad days and coping emotionally with the eternal battle of trying to find the right balance between living life to the fullest and the need for rest and moderation.

To me, chronic illness is like looking in the rearview mirror and seeing a tailgating car behind you.  The car appears close during times when I’m unwell and is more distant during stable times — but it’s always there, as is the accompanying fear.     

It has taken almost 38 years of ups and downs, but the prospect of a transplant is now, as my doctor puts it, “on the table.” Getting to the point of transplant hasn’t been what I had imagined it to be. Rather than the gradual and insidious decline that I always pictured, I have deteriorated very quickly, caused by reoccurring secondary issues that led to multiple hospital stays. I always believed I would somehow be able to cope better when the worst happened because illness had always been a part of my life. It wouldn’t be like a sudden diagnosis — or so I thought. Despite my intellectualizing, I had little chance to prepare.

I am very critical of so called “motivational” quotes or material that simplistically tells us not to be fearful, that it’s all “mind over matter” or that we should always live life to the fullest — like it’s that easy. The problem with this simplistic thinking is that it denies the individual’s experiences of illness and the grief of being unwell. It undermines the enormity of things like becoming immobile, losing employment and, of course, the mental struggle of it all. Instead, society seems to want people with chronic illness or disability to always be “strong” or “inspirational,” and in the telling of these narratives, the struggle is often minimized and emotions dampened. It’s easier for people to switch off from engaging with this, which can create a potentially very lonely, silencing and marginalized place for those with chronic illness or disability.

Until very recently, I always found myself trying to soothe the fears of people around me. I always put a positive spin on how I was feeling, not wanting to worry others, but also because I felt like I should be the “strong one” the one who could manage on my own. These beliefs worked when I was stable and well, but they were much harder to sustain on days or periods when I was struggling.  During these times, trying to put a positive spin in order to soothe people’s worry was exhausting. It brought on anxiety caused by the need to appear well and isolation as I tried to manage alone.

There was also a fear that people wouldn’t react well if I told them the total truth. Maybe they would distance themselves or be judgmental at my inability to cope. I have now made the conscious decision to be totally honest — it has been so freeing, lifting a huge burden off my shoulders. I have discovered that by minimizing times when I was not feeling well, I was inadvertently robbing people around me of the chance to support me. 

Where there is fear, there is also anxiety, and it can quickly turn into depression if it isn’t shared with others. In my experience, attending to either fear or anxiety is something the medical system doesn’t do very well. It feels like there is a total denial of its existence. It’s not only frustrating, but it also doesn’t take into account the importance of emotional states on well-being. There is much more to people than their diagnosis or their current situations. Nurses are usually the best at it and more attuned. It has been a huge relief when a nurse or, luckily for me, a doctor who was prepared to have the hard conversations. I have observed the same relief for others during my many stays in the hospital. I could see the mental and physical difference these emotional conversations immediately make. The medical model needs to recognize that patients experiencing varying levels of fear, anxiety or depression are not the exception, but the norm.

In my work, I have always believed in the importance of finding individual ways to cope with difficult situations, but nurturing and maintaining strong relationships are also needed for our well-being and sense of belonging. These are the antidotes to fear, anxiety and depression. As I was assisting others with this professionally, I was neglecting it for myself.

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Lead photo source: Thinkstock Images

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