To Myself and My Husband on the Day We Became Heart Parents

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I see you sitting there in that scan room. Cold with fear and the terrible realization that something is wrong, very wrong with your baby’s heart. I see you clinging to each other, neither wanting to voice the terrible thought that fills both your minds — that your child will die. I see your tears, your pain and the little spark of strength that will ignite and grow and keep you going.

I see you, outwardly trying to remain calm as you wait for the first echo. I see the way you hold tightly to each other’s hands. Watching as the cardiologist draws diagrams, trying to understand what exactly is wrong with your child’s heart. I feel your fear as you take in the prospect of multiple surgeries; the odds that your child may not see their 5th birthday. You have no idea how or where you will find the strength to get through the journey that lies ahead of you; you only know you must.

This is the beginning. This is the hardest day you have ever faced and there will be still harder ones ahead. You will get through them. That little spark of hope and faith will lead you to search and question and be willing to take huge steps into the unknown in order to give your child a chance of life. You will pray for miracles and hope that you will be granted them. You will discover that pain and joy can go hand-in-hand — that fear of the future forces you to live in the moment and make the most of it.

You will discover just what a blessing the love and support of family and friends really is. There will be those who do not know what to say, whose silence may come across as hurtful. Forgive them, and move on. Others will surprise you with their kindness; these are the ones who will be there for you when you need them most. You will discover friends you never knew you had, but sadly lose some along the way, too.

When you hear your baby’s first cry, you will feel pure joy, overwhelming and beautiful in its intensity. You will treasure those brief few moments of being able to cuddle your daughter before she goes to have her first surgery. While those hours of her being in surgery will also be full of fear, the joy of those early moments will carry you through.

You will discover that life on the intensive care unit is a rocky roller coaster ride and things can change very quickly. You will spend hours sitting next to your child’s cot, gazing at her. That moment when you can finally cuddle her will be utterly magical, despite your nervousness about all the wires and tubes surrounding her.

The momentous day that you finally get to take her home will be a hugely proud moment. You will wake repeatedly in the night and check on her. There will be many, many moments of worry but you will enjoy being able to have a taste of normal life even if you don’t dare look ahead.

Going back into hospital for future surgeries will always be terrifying. That moment of handing your child over to the surgical team never gets any easier — in all honesty, it will get harder. You will pace hospital corridors, praying fervently that all will go well. I hope you will always feel that huge rush of relief when being told another surgery has gone well.

You will discover a whole community of heart families; friends you make during your time on the ward and others that you encounter through social media. Knowing that there are others who are making similar journeys and walking alongside you will encourage you. There will also be those who are further ahead in their journeys, whose stories will give you hope. One day, your stories will help to give hope and encouragement to others.

parents holding their newborn baby

Be kind to yourselves and each other. There will be many moments when it all feels too much. It helps to cry sometimes and to acknowledge those fears. There will be many moments of feeling guilty — especially when tiredness and frustration get the better of you. You are human. No one is a perfect parent, no one gets it right all the time — we all have our off days now and then. Don’t be afraid to seek help if it all feels too much to
cope with. Remember too that you are not in control. No amount of worrying about what lies ahead will change it. Trust your instincts, have faith in those caring for your child and don’t be afraid to ask questions if needed.

You will get through this. Your child will bless you in so many ways — her zest for life, her joy, her smiles, her hugs. You will tell her every day how much you love her, never forgetting how lucky you are. The journey is hard, but you know you would travel it all over again to have your child in your arms. And while the future may be scary and unknown, you won’t let the fear of tomorrow rob today of its joy.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

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Why Parents Need to Know About Rare Congenital Heart Defects

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Ariel May smiling
Ariel May.

This story is about my daughter, Ariel May. She is 8 months old, and will be 9 months on July 31st. She has always been a very happy baby, loving to play with others and always smiling. She was crawling and standing up, and slowly learning how to walk while holding onto the edges of furniture. She even got her very first tooth!

We were a very happy family, we loved to give her cuddles and play with her. But six days ago everything turned upside for us. Over a period of two weeks, Ariel had slowly stopped eating, which we initially thought was due to her teething. We assumed her bottle was irritating her gums and that was why she was not wanting to take her bottle as much. On Wednesday, July 20th, we took her to the emergency room because she stopped eating altogether and was panting very quickly. She had eaten two bites of baby food and 4 ounces of formula that morning. By the afternoon, she wouldn’t touch anything. Upon arrival to the ER, they took an X-ray of her chest which showed pneumonia, so they decided to hook her up to an IV for fluids and give her oxygen so her levels would go back up. But 20 minutes after starting her on oxygen, everything changed.

She coughed, then threw up a frothy, mucus and blood-mixed liquid and lost all of her color.

Ariel May in the ICU
Ariel in the ICU.

Immediately, the doctor knew she did not just have pneumonia, so they began to take blood samples to test while waiting on the ambulance from a different hospital (since the one we had taken her to did not have a pediatrics floor). They also called a critical care team in, if anything were to happen on the drive.

When she arrived at the next hospital, as the medical staff was moving her from her carseat to the bed, she went into cardiac arrest. It only took them a few minutes to revive her, but they knew they had to do an ultrasound of her chest immediately to know what was going on. While doing the ultrasound, they found that she had a very rare heart defect called cor triatriatum, where the membrane that is in the heart, which helps the heart from overworking while babies are still in the womb, does not go away. The membrane in her heart had become thicker due to it growing with her heart and the blood going into the right chamber of her heart was going through a very tiny pinhole. The rest of the blood was going through the left chamber to her lungs and getting backed up in her lungs. Due to the blood building up in her lungs, they had to put her on a ventilator. When that didn’t work, they had to change over to a hand pump just to help her breathe because her lungs had collapsed.

After giving us this information, the doctors told us that the only way to fix this was to go in and do surgery. The first type of surgery she needed would require her being airlifted to a hospital two hours away. Once she arrived to the hospital, they immediately put her on extracorporeal membrane oxygenation (ECMO), a machine used to help take over the heart and lung function so her body could rest.

On Friday, July 22nd, they took her down to surgery which took four hours to complete. They decided to keep her chest open to monitor her healing and the extra blood and fluid her body was leaking, from all the stitches. The doctors put her on an open chest ECMO and chest tubes to help drain the extra fluid.

And now, because of her lungs and heart overworking for the past eight and a half months, she is going to be in the ICU for a very long time.

My daughter’s story needs to be read. Even though this condition is very rare, it goes misdiagnosed quite often, resulting in death.

I want to let parents, new parents and even other family members know about this condition, so if their baby starts “acting funny,” then they can take them to the doctor and get checked. In fact, even if the doctor seems certain, push to have tests done because you never know what could actually be going on. The sooner the doctors can catch it, the less chance a baby has to suffer and fall ill.

MIGHTY PARTNER RESOURCES

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

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Christina Schuetz's child

9 Things Parents of Kids With Congenital Heart Defects Want You to Know

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Here are nine things parents of children with a congenital heart defect (CHD) want you to know, but may be too scared to say:

1. My child’s diagnosis is most likely worse than you think it is.

One of the wonderful but difficult realities of CHD is that children often don’t look as sick as they are.

Therefore, when we post pictures or you see our children in person, it can be tempting to question the severity of their condition based on the way they look. CHD is very much an internal disease that can manifest itself outward, but it doesn’t always do so.

2. CHD is lifelong.

“So is she cured now?” is a question I was asked many times after my daughter’s first open-heart surgery. This is one of the most challenging concepts to convey about CHD. Having this disease means there is something structurally wrong with the heart. There are surgeries to help “fix” these issues, but many of them are bandages to buy a child time until it’s time for a new one.

Each time a surgeon goes into a child’s heart, he is altering something in order to help the heart function as a normal heart should, but he isn’t constructing a normal heart. He can’t.

If a baby is born with an abnormal heart, that heart will never be normal. It will never be “cured.” It might be improved. It might be mended. But normal? No. Never normal. People born with CHD live with CHD their entire lives.

3. I am not overreacting.

We don’t mean to come off strong with our pro-vaccination stances and continual use of hand sanitizer, but we’re trying to prevent my child from dying. Literally. Any illness that a person with a healthy heart goes through could very well kill a child with CHD.

The health of one’s heart controls so much of the health of other organs. Children with CHD are often immunosuppressed and don’t have the respiratory reserve to handle the additional work the lungs would need to do in the case of a severe illness, the flu or even the common cold.

We wish we didn’t have to make sure everyone who comes to our home had a flu shot. We would love to be able to take our children to the park without thinking about it. We hope one day to be able to stand in an elevator without holding our breath or touching the buttons with our elbows for fear of picking up germs. But we can’t, and some of us never will.

We know that at times it seems like “a little much,” but trust us, when you have a team of cardiologists, nurses, therapists, surgeons, immunologists and other specialists who tell you one virus could put your sweet baby on a ventilator for weeks, on life support or even take her away from you forever, there is no such thing as “a little much.”

4. I want to spread awareness.

You probably see us and hear us discussing CHD often. We do this because we’re desperately trying to bring one of the most common childhood diseases to light. CHD research is “grossly underfunded” despite its frequency, according to the Children’s Heart Foundation. 

We talk about it often because we want more for our children. And the more we talk, the more people understand. The more people understand, the more funding for research. More research may mean more time with our children.

5. I want to hear about your healthy babies, too.

Is it difficult sometimes to login to social media and see all the posts about heart-healthy kids? Sure. Is it something I’ve had to actively work on? Yes, I’m human.

However, I have never met one heart parent who resents another parent for having a healthy child. We work every single day on the acceptance of our children’s diagnoses, and part of that is celebrating anything that is not medically devastating. So if your baby rolls over for the first time or says his first word, tell us. We want to enjoy that moment with you! If your kid falls off a tree and breaks his arm, tell us. We want to send a card and make you dinner!

I have had people begin telling me about a medical issue with their kids by saying, “It is nothing compared to what you’re going through.” I really appreciate it when someone acknowledges the magnitude of what our family is going through, but comparisons are something I do not make. I can’t. You’re correct in saying that three stitches from tripping on the sidewalk is not the same as a 14-hour open-heart surgery, so let’s not even compare them. What is the same is seeing your child go through something painful. Let’s just meet each other where we are at and be there for one another accordingly.

6. I am different.

Having sick children changed us. It needed to. Life has to look different in order to keep our children safe. Our days are filled with counting respiratory rates, assessing the color of our children’s skin to make sure they don’t look too blue, administering medication, cleaning syringes, calling insurance companies, therapists, doctors, scheduling
appointments, working on their physical and occupational therapy exercises and at the same time trying to enjoy all the normal baby moments we are afforded.

We won’t call or text as much. We won’t always work extra hard to get a sitter for that event you want us to go to because there is a very short list of people whom we trust with our fragile children.

Also, we are tired. We are so tired. The physical and emotional exertion it takes to care for our sick babies is massive. We live every second, weighted with the thought that we may possibly lose our children. We have been softened, hardened, morphed and crushed. However …

7. I am the same.

Please don’t stop asking to see us. We know that sometimes it’s hard to know what to say to us about our kids, but you don’t always have to talk to us about our kids. The people you knew before our world changed are still here. We have a few more dents and scratches, but we are here. We still love you. We miss you. Ask. The answer won’t always be yes, but please ask. The inquiry won’t hurt us, but radio silence will.

8. I might want more children.

During my daughter’s first hospital stay (which lasted almost 40 days), there was a night when I just needed to get out of that place. I was overwhelmed and emotional, and I needed to go someplace that didn’t have constant beeping of monitors and the smell of Purell.

I ended up at a drugstore. While there, I literally stood in the deodorant aisle and began to cry. A worker came over and asked if I was OK. I told her, very briefly, what was going on in my life, and she told me her cousin had two kids with CHD and was about to have a third.

In that moment I thought, “Wow, I was supposed to come and meet this person tonight. This is so nice to have someone here who understands this burden I’m carrying.” But then she went on, “I was surprised she had her second kid. And I am really surprised she is having another one. I mean, you’d think that after one kid was born not normal, you’d just stop. But you seem really responsible, though, so I’m sure this is your last kid.” 

Ouch.

If you would have asked me how many kids I wanted before I entered the CHD world, I would have said, “Like 800.” I love being a mom. And you know what? I don’t know if we’re ever going to get pregnant again. Being a CHD parent comes with a lot of anxiety. Despite the fact that we have been told by many doctors not to worry about having this happen again with another baby (the odds are incredibly slim), my last pregnancy was terrifying, and I will always be scarred by it.

However, when and how many children we decide to have is a personal decision between my husband and myself — as it is with any couple. CHD parents will never need your commentary on whether or not they “should” have more children. Trust me. They have heavily considered anything you have to say.

9. I am so thankful for you.

We need support so badly. This is such a stressful, lonely, chaotic, devastating road we are on, and we need you. Supporting us in any way is appreciated: meals, phone calls, donations, texts, flowers, cards and, above all, prayers. There has honestly not been one act of kindness I have considered “small.”

I have received Facebook messages from people I haven’t seen in 10 years just to tell me they heard about our daughter and they are praying. This alone has driven me to tears. They say it takes a village to raise a child, and anyone who shows support for our kids becomes part of the CHD village.

We didn’t choose this life, but we are all trying to make the best of it, and we are so thankful for anyone who tries to help make that happen for our kids.

For more information, please visit the Children’s Heart Foundation website where I got all of my medical facts and statistics.

Follow this journey on heart broken : soul mended.

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Don’t Tell Me You're Sorry, Because I Am Not Sorry

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When you tell me you are sorry, I wonder what for? Is it that I have overcome so much? Or maybe that I have learned to appreciate the small things in life? Maybe it is because I have found my passion in life?

If you are sorry for me, you lack the ability to see everything that has made me who I am. I have never questioned why I was born into an imperfect body. In fact, I believe it is my biggest blessing. My strength, compassion, values, and my bonds to my friends and family are all born out of the fact that I have been fighting congenital heart disease from the day I was born.

I could sit around and sulk and feel sorry for myself, but what good does that do me? It would only drag me down. I am not going to lie, it is not always easy to stay positive on the bad days. When I don’t get out of bed, I feel weak. But even in those moments I don’t feel sorry for myself, but rather a disappointment that I cannot be stronger.

This may seem like some overly optimistic falsification of my true feelings, but it is the truth. It reminds me of a quote from Steve Jobs, “You can’t connect the dots looking forward; you can only connect them
looking backwards. So you have to trust that the dots will somehow connect in your future.” It is amazing as I look backwards how all my dots have connected to make my life beautiful. I trust that my dots will continue to connect in the future. In 10 or 20 years I know the alignment of those dots will be even more beautiful.

When you hit hard times I won’t tell you I am sorry, but I will offer my hand to lift you up however I can. I hope in those moments you can learn to understand everything that is great about life, and appreciate the small things, just as I have. Unfortunately, it often takes these life-altering events for most people to realize all that is precious in life. That is why I count my challenges as a blessing. I don’t wish hard times upon you, but I do wish you could see life with my perspective.

So don’t tell me you are sorry. Tell me you are proud of me. Tell me you pray for my continued health. Tell me I inspire you. Tell me you love me. Tell me to keep going after my dreams. But don’t tell me you feel sorry for me, because then I know you are missing the point.

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To the Families of Children With Severe Congenital Heart Defects

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We might not say it. Maybe we can’t. Maybe we desperately want to, but (rational or not) admitting it to you can feel like letting down the guard we have put so tightly in place — a guard that helps us stay upright most of the time. That air of confidence we wear like a suit of armor… it’s not as impervious as we would like you to think.

We need your help. We need your love. We need your acceptance. We need you.

We have a lot of challenges behind us and ahead of us. We are new(ish) parents with a child who is as flawless as her heart is flawed, and we don’t always feel confident in the choices we make for our family. We agonize over everything. Many decisions literally have us on the verge of tears or war depending on the issue in question. Or minds swirl relentlessly with questions and anxieties. Did she eat enough today? Is it OK to let her run like that? Should we go to the birthday party? I think one of the kids was sick last week, so how long should we wait before we let her play with them again? Did I sanitize that before she touched it? She has a cough. Is it a respiratory infection or did she just drink her juice too fast? This is often what goes through our brains. 

So what does this have to do with you? Everything. Because every time someone questions our decision or even outright says we made the wrong choice, it pours salt into our own self-inflicted wounds. Every time someone receives a turned-down invitation and follows up with anger or displeasure, it creates new worries and anxieties, and we have so many of those already. We are parents doing the best we can, and your support, trust and love can be a massive relief, the magnitude of which cannot be described by my mere words.

The author's daughter, playing on the grass

You hold an impressive power. You have the ability to manifest a positive change in our lives and in the life of our children. Our love and respect for you is what makes your every word so weighted, so impactful. A friendly phone call, a supportive hug, an understanding text when we can’t make it to a function — positivity from you in any small way can mean the difference between hours of second-guessing and overanalyzing our every move, making more time for joy and love.

We need your help. Our daughter needs it, too. And I think you need ours, so let’s help one another. We can do this alone, or we can do it surrounded in acceptance and love — something we all deserve.

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When I Had to Tell My Daughter With a Heart Condition She Couldn’t Swim to the Deep End of the Lake

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Just a couple of years ago, my 13-year-old daughter was invited to a beach birthday party by one of the girls at her school. This was a big deal because she had been struggling to make friends.  Living with chronic illness and being hard of hearing can at times make it difficult for her to relate to others her age.

The party was held at a beautiful private sandy beach on a local inland lake. The shallower swimming area was roped off, and beyond that was a raft with a diving board located in much deeper water known as “the drop-off.” She seemed to be having a good time, and was doing a pretty good job keeping up with the others despite her tendency to become easily fatigued, and her inability to hear very well without her hearing aids.  Hearing aids cannot be worn while swimming.

I was watching the activity from the shore when I realized the group of bubbly teen girls were heading out towards the raft in the drop-off.  I saw my daughter hang back for a moment, contemplating being left behind once again or pushing on through her discomfort in order to just be “one of the girls.” I began to panic as she started to follow the others into the deep water of the drop-off.

At that moment, I was faced with making a heart-wrenching decision. Should I let her go or should I stop her?  Did she have the strength to make it to the raft, there and back?

My daughter lives with chronic cardiac issues, and becomes fatigued very quickly when she is doing something like climbing stairs, walking for a long period of time and especially swimming. Only a few weeks prior, she had to wear a 24-hour heart monitor which had shown a 5-second episode of what appeared to be complete heart block. This means there is a misfiring in the electrical activity of her heart; specifically, she has long PR intervals and she skips heartbeats. It is a condition we and her pediatric cardiologist have been monitoring closely.

I was growing anxious as I began to have visions of her making it halfway to the raft, struggling and slipping beneath the surface of the dark water, as I watched helplessly from the shore.

I had to make a decision, and quickly.

It only took a split second for fear and logic to override any concerns I might have for my daughter’s social life as I began shouting her name from the shore.  There was no way in hell I was going to let anything happen to my baby.

The other parents and the lifeguards looked up, startled, trying to locate any potential emergency.

She did not respond.

Again, I shouted her name, my fear beginning to mount as I realized she might not be able to hear me because she did not have her hearing aids. I am not sure how it happened, either she heard me or she just happened to glance in my direction, but I somehow managed to get her full attention.

I clearly shook my head back and forth as I made the signs for “No” and “Stop” in ASL (American Sign Language). I could tell by the look on her face that she was beyond embarrassed at the attention I had drawn her way.

There was a part of me that did not blame her one bit.

She came back to shore and defiantly said to me, “I know how to swim.  You never let me do anything on my own!  I hate you!” with tears forming in her eyes.

I tried to respond calmly, but my own heart was beating uncontrollably and my voice likely shrill and on edge.

“I know you can swim, sweetie, but do you remember how tired you got in the pool in Florida last month when swimming that short race with Grandma? You could not catch your breath afterwards. If you get tired out there, in the drop-off, there is no place for you to put your feet down and rest. Honey, I am sorry, but this is a safety issue.”  She looked back out towards the girls diving off of the raft, laughing and having a good time. I could tell she was contemplating what might happen if she disobeyed my direct order and tried to swim to the raft anyway.

In a very firm voice I stated, “And if I see you go out there anyway, I promise you that I will come in after you fully clothed in front of everyone here at this party.  Do you understand?”

She huffed off back into the water and swam by herself until the girls came back. After assuring the other adults that everything was “all right,” I stood on the shore alone, hiding tears under my dark sunglasses.

I tried to fix the situation by asking if she could take a flotation device with her out to the raft, but the lifeguards would not allow any floating devices to go beyond the swimming area, and they would not allow individuals who require a life jacket to swim to the raft either.

If I had let her go, she would have been completely on her own out there… where the water dropped off into a dark black hole.

I felt as if I had betrayed my daughter.  I stopped her from joining in with all of the other girls her age, with whom she so desperately wanted to fit in, and I did it in a very public and and frantic way. I was sad and angry with myself. Sad that my daughter had to deal with so much at such a young age, and angry that I had to be the one to set the hard limits necessary to keep her safe.

I have worked so hard for many years trying to help her realize all of her wonderful abilities. I wanted her to see herself as an individual who could do many of the same things that other kids her age could do. I did not want for anyone to define her, or what she could and could not do because of her medical conditions.

But there I was, guilty of doing that very thing.

It sucked beyond the telling of it from my perspective, so I can only imagine what it felt like for her.

I hope someday she will understand just how many difficult decisions I have had to make on her behalf… and that she might forgive me.

The truth is, I wanted nothing more than to let my daughter swim out to the raft in the drop-off with all the other girls on that day. In a perfect world, instead of standing alone on the shore, I would have been at the party, socializing with the other parents, leaving any potential life-and-death situations for the “professional lifeguards” to handle.

But I couldn’t. Could I?

I hope I got this one right…

I hope…

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? Check out our Submit a Story page for more about our submission guidelines.

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