Little girl with heart shaped pillow in the wheat field. Girl cuddling with heart

This Is What 'Normal' Looks Like for Our Child With a Rare Heart Defect

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Jessica wearing her heart jumper and standing next to the measuring chart on her wall
Jessica.

Most of the time our family life ticks along quite normally. Every so often though, we hit a little bump which reminds me once again that our normal is a little more complicated. Last week we had one of those moments. A phone call from school to say that my daughter Jessica, who has a complex heart defect, hypoplastic left heart syndrome, was unwell. Unwell in this case translated as being blue and jittery. When I got to school, Jessica was lying down on the floor in her classroom, wrapped in her coat to warm her up. The teaching assistant was sitting next to her, watching her closely while holding her hand and telling her a story. Jessica’s lips and cheeks were purple, although thankfully she no longer appeared jittery.

Purple lips and cheeks aren’t all that unusual for my daughter in the cold weather. Her heart condition means her blood oxygen levels (sats) are always low. They’re usually around 80 percent, whereas normal levels are 95 to 100 percent. Her school has a clear plan on what to do when there are concerns with Jessica’s wellbeing. Blueness after running around or being outside usually indicates a need to stop and rest and/or get warm – hence the lying down wrapped in her coat. Normally Jessica’s color improves reasonably quickly. This time, it was the combination of jitteriness and blueness that had caused concern.

It was one of those moments when I am truly thankful for living close to both the school and the doctors’ surgery. Within minutes, we were at the doctors’ surgery waiting to be seen. Jessica’s color had improved by the time we saw the doctor, who checked her over thoroughly. She seemed well apart from having a cold. It seemed that the likely cause of her going blue and jittery was due to her blood oxygen levels dropping briefly as a result of running around while full of cold. This was a reminder of how a cold can hit her hard at times — a reminder of how different Jessica’s “normal” is compared to other children in her class.

I’ve had more than five years of experience to understand what is normal for Jessica, what is concerning and what I need to do about it. One of the hardest things for me with her starting school, was having to trust someone else to keep a close eye on her. It takes a lot of trust to hand that over to school and I’m thankful that so far, they seem to have reacted quickly to any concerns. What’s also important is, although the teachers might be keeping a closer eye, as far as Jessica’s day-to-day life at school is concerned, everything is completely normal. She’s just a normal, happy little girl who happens to have a special heart.

This is what normal looks like for us:

  • Using words like “cyanosed,”, “oxygenated,” “sats,” “echo” (short for echocardiogram) and “cardiologist” as part of our normal vocabulary.
  • Making up medicines several times a day as part of our standard routine.
  • Packing a folder containing details of Jessica’s medical history whenever we go away from home.
  • Going on holiday and making a mental note of where the nearest ER and children’s cardiac units are. I’ve been known to save the address of the nearest ER into the sat nav if Jessica shows any sign of being unwell while away.
  • Explaining to Jessica when she was a toddler that the doctors’ surgery is “like the hospital but smaller and you don’t have sleepovers there.”
  • Referring to hospital stays as “sleepovers at the hospital.”
  • Worrying a minor illness like a cold might result in another hospital stay.
  • Looking at the medical information box on a form and knowing we’re going to need another sheet of paper. Most of the time I already have a prewritten document to attach – it saves time.
  • Not having to explain what anything in the toy doctor’s kit is for, and having extra items in it from previous hospital visits.
  • Having to think about what to do when my heart-healthy daughter was ill outside of our doctors’ surgery opening hours because unlike Jessica, she doesn’t have open access to the children’s ward.
  • Accepting that Jessica will often look quite blue in the winter and constantly assessing how blue she is and how quickly she pinks up if she warms up.
  • Being on first-name terms with all the staff in our local pharmacy.
  • Living in the moment and not looking too far ahead.

Our normal might be a little more complicated, but for us it’s just everyday life. We wake up, we get on with our day, and we do most of these things without really thinking all that much about them. We’re just a normal family, making memories and enjoying everyday life.

In many ways, those complicated layers have helped me to appreciate the little moments, the ordinary moments, the moments when we’re just like any other family.

I never forget how lucky we are to have those moments.

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To the Doctor Who Urged Me to Abort My Child With a Heart Defect

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While in my college courses years ago, we discussed the topic of abortion quite often since I was going into a career in the medical field. I often thought about being faced with the decision to abort because my baby had a major medical condition and most likely would not live, especially if it meant the child would have numerous medical procedures. But I learned over the years that doctors aren’t always right, and they don’t hold a magical book that can determine the exact date of expiration on a life.

When I walked into your office, I was scared, overwhelmed and in medical mode as I watched the tech scan over my plump baby bump. I could see the blood flow was wrong in his tiny heart. But I also felt him roll around, and I saw his tiny facial profile.

When you walked in, you talked directly to the ultrasound tech, saying things like “critical aortic stenosis.” Then you smiled and said, “Excuse us for speaking our ‘doctors’ jargon.’ I will explain fully in a minute.” You looked utterly surprised when I explained I already knew what you were talking about, and then you directed the conversation to me and explained how I was a very observant person to have seen that our 20-week fetus only had three chambers in his tiny heart.

You went on to explain you had never seen a case this critical that didn’t turn to a condition called hypoplastic left heart syndrome. You explained the left side of his heart was extremely small and barely functioning, and it would end up no longer functioning. You explained his aorta was and would continue to become narrow/smaller. At this time, we would have a list of options, none of which would be easy.

We could choose:

– Abortion

– Birth him and then take him home for compassionate care (no interventions, just watch him eventually pass away)

– Three open-heart surgeries before age 4

– Heart transplant

Abortion, though, was your main focus. You continued to speak of it, saying how this life would be hard on him. That it would be extremely hard on our family, as my husband and I were younger, and we already had two younger children. You said he would have little to no quality of life. You said we should decide within the next two weeks because of his gestation.

I was pissed and hurt at such a gesture. Here we were receiving life-changing news, and you were telling me I could just end it all with a decision. A child I had carried now for 20 weeks. I felt him kick and saw pictures of his little face. There were options to help him sustain life, and I believed you just wanted to get rid of him. You gave us no hope, as you said most of these kids don’t make it out of the hospital, and most never make it to kindergarten.

Three years later, I’ve begun to understand why you stated these things. Why you continued to bring it up, and why you seemed to be angered at the thought of us not choosing it.

I understand that at your place of work, you are faced daily with the faces of grieving parents. Parents who’ve just heard devastating news from you. Parents wanting to hold onto their bundle of joy for as long as they can, consumed with their emotions and “selfishness” of wanting to keep their child alive. Because who wants to face the scary part that most people never experience? I’m sure you thought about the tax dollars “going to waste” for a child who wont make it anyways. You were not properly educated on the new technology and interventions that have been keeping children like our son alive now for the past 20-plus years.

You were thinking of another young couple taking on too much, and another child being placed in the system because they can’t properly maintain care for such a fragile child.

I understand.

Your words stick with me daily.

When he came out of his first open-heart surgery hooked to life support, hanging on the edge of life and death, I saw heartache.

When I saw his enlarged heart beating through his chest cavity because he was too swollen and unstable for his chest to be closed for two weeks, I saw hardship.

When I saw him cry tears but heard no sound because of his breathing tube, I second-guessed my decision, just like you did.

When we made the decision to have him moved to a more equipped facility out of state and I was separated from my husband and children for four months, I stood by his side every day.

When I saw him smile for the first time, I saw quality of life in the form of happiness.

I watch him use his walker through our house, as he smiles and yells, “I luu you mommy.” I hear quality of life and see it with my eyes.

Though he had and has many daily struggles, he perseveres. He smiles daily; he laughs big belly laughs. He gives the biggest hugs and makes our family complete.

You said most of these kids don’t make it to kindergarten, and we have seen that evident many times, sadly. But their lives were worth every second. Their smiles will forever be remembered. The memories they made with their parents will as well.

Next week our sweet boy will be starting preschool near our home. I will be handing him off again, but in the best shape he has ever been in. We know the reality of losing him at a moment’s notice. We have come close many times, but I know we made the best decision for him when we chose to fight. Any second we have or have had with him has been worth it — maybe not always the easiest, but always worth it.

Even with his critical congenital heart defect, mixed with the hypoxic ischemic brain injury that occurred during his first surgery (that caused him to have cerebral palsy), he still continues to amaze doctors with his continual progress.

This type of life isn’t everyone’s best choice, and we understand that. We also understand it’s your duty as a health professional to give us all options (even the uneasy ones), but our choice was best for us. I hope one day you will have the pleasure of meeting our sweet boy, and that you can be better acquainted with survival rates of children like him in the near future.

Follow this journey on 4 1/2 Hearts.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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The Fear That Lurks in the Back of My Mind as a Special Needs Mom

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There’s a fear that lurks in the back of my mind. It’s always there. Most days I can push it away, but every so often, something will bring it back into sharp focus. Sometimes the triggers are completely unexpected — a photograph, a line spoken in a movie, a chance remark overheard.

This time, it was seeing a preschool t-shirt of my eldest daughter, who has hypoplastic left heart syndrome. Summer clothes were starting to be put away as fall arrived. It was an acute reminder of time passing by, and with it, a stark realization of the fragility of life.

A dozen memories flashed through my mind — sports day, days out at theme parks, trips to the park, picnics in the garden. My daughter’s beautiful smiling face, her joy, her zest for life shining through. So many happy memories. I felt a sense of sadness for a summer gone by and for moments that now only exist as memories.

It’s not just the passage of time, the bittersweet realization my little ones are growing so quickly or the end of summer that brings me to tears. It’s the fear that nags at me, the fear of what my little world may look like when summer comes again. It’s the fear of the unknown and the steps in the journey yet to be taken. It’s the reminder of the times when we lived from moment to moment, the days spent next to a cot in the pediatric intensive care unit and not knowing what the next hour would bring. The knowledge that one day soon, my child’s life will once again be in the hands of a surgeon.

It’s something I try not to think about if I can help it. But sometimes the fear of what the future may hold threatens to overwhelm me. These are the moments when all I want to do is stop time from passing by, to hold onto this moment and to make it last as long as possible. I can’t stop time. I can’t change what the future holds, but I can do this: I can have hope and faith, and make the most of today.

And so today, I will hold my girls tightly. I will treasure those moments and store them in my heart. I will push away the fear and focus on the here and now. Today my girls are both here. Today we can have fun together and make memories.

I don’t know what tomorrow will bring, but I won’t let the fear of it take the joy out of today.

Louise George the mighty.2-001

Follow this journey on Little Hearts, Big Love.

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To the People Who Support Us on Our Journey as a Heart Family

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Dear friends and family,

From the day we found out about our daughter’s heart condition, you have been there supporting us, encouraging us, praying for us. You have cried with us, held your breath in hope with us and celebrated each successful step of the journey with us.

We were devastated and scared at the start, not knowing how we would find the strength to face the journey ahead. You made it clear that no matter how dark and difficult the journey might be, we would not have to face it alone. So many emails and messages of support received, messages that were read over and over again. You may not have known what words to say, but you will never know how much strength we drew from the few you did. The words may have been clumsy, or broken, but there was so much love and encouragement in them.

We may not have spoken to or seen each other for several years but when we needed you, you were there. Sharing words of sympathy and comfort, stories of hope and prayers for a miracle. You shared our story with your friends, with your churches. There were people all over the world praying for us, praying for a miracle to happen. To know that we were loved and prayed for by people who have never met us gave us strength and hope.

Thank you all for all those small acts of kindness along the journey. The friends living near the hospital who offered their spare room so that we had a place to stay. The friends who let us use their house while they were away at Christmas so that we could leave the hospital for a short time and enjoy a Christmas dinner provided by family in a more home-like environment. The friend who offered some expressed breast milk when I was struggling to produce enough for my daughter’s needs. The many food parcels that meant we took time to eat something other than a sandwich from the hospital canteen. The cards we received, the little moments captured on camera, the baby clothes lovingly given and so many other thoughtful little gestures that helped tell us how much you cared. 

There are many things that I have been thankful for since the start of our journey as a heart family, and the love of our friends and family is one of the biggest things. From the very start, you have been there supporting us, encouraging us, praying for us. You have cried with us, held your breath in hope with us and celebrated each successful step of the journey with us. Thank you all for helping to make our journey as a heart family a little easier. We are truly blessed to have you as our friends.

Follow this journey on Little Hearts, Big Love.

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Why I Choose Not to Be Offended by Jarring Comments About My Son

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Bennet’s first months were so incredibly painful. I know you “heart moms” and other mothers with empty arms understand. But realistically, there aren’t a huge amount of people who can completely understand, right? For many, that specific kind of pain isn’t something that can be fully grasped because they haven’t been given that uniquely painful journey.

And the truth is, it doesn’t ever disappear. It just becomes a part of us. A beautiful, messy, tragic part of our story as mothers. It’s something I personally wouldn’t change for anything, but I still get a huge lump in my throat when I think about it. When I think about my life before hypoplastic left heart syndrome (HLHS), I’m thankful for my growth. I’m thankful for what I believe God has done in my life as a mother. But it’s still really painful.

Around the time when Bennet was 6 months old, the tide began to turn for us. We were slowly acclimating to our new life. We were actually feeling joyful again. We began to stand in the sun and feel human again. And Bennet started smiling, really smiling for the first time in his pain-filled life.

And then it started. The jarring comments from the people who just couldn’t understand.

“Oh, I’m so happy he is all better now.” Well, he still has half a heart so …

“He is going to do big things when he is an adult.” We aren’t ready to talk about that. It’s a difficult subject. We are focused on enjoying today.

“But isn’t he fixed?” No, he will never be fixed and will require major interventions for the rest of his life.

“Now that he’s better, you must be relieved.” OK, sure.

“I have a friend whose son had heart surgery, and he’s 100 percent A-OK now.” You do realize there are different heart conditions, right? And Bennet’s condition is really, really bad.

It’s not that anyone was trying to be insensitive, it’s just that Bennet’s limitations, his pain and the reality of his situation weren’t in their faces like it was when he was lying in a hospital bed with his chest open. We were smiling again! Bennet was smiling! I believe God had turned our morning into dancing. And people were happy for us. They didn’t understand. But did I really expect them to?

So around that time I made a decision. I chose not to be offended. This doesn’t mean that I won’t help educate someone when he says something that’s just incorrect or uneducated. And this doesn’t mean there won’t be someone out there who is actually just being cruel (though I haven’t experienced this yet.) But those people don’t get to offend me, either. It’s not worth it, and, if I’m being honest, I pray I have grown way beyond the point of being offended by these things.

Instead, I’ll ask myself what the likely motive was in their statement.

Was it to encourage me?

Was it to connect with me?

Were they trying to relate to me?

Was it an honest question that sprouts from a lack of education?

I’ll try to see my boy through their eyes — not my jaded, traumatized eyes — and begin to see why they might not understand.

And I’ll show grace to others in the same way I want grace to be shown to me.

People are human. They are imperfect. They can be totally weird sometimes. I can be totally weird sometimes! So I choose patience.

arms throw a baby boy into the air

A version of this post originally appeared on A Beautiful Window.

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To the Stressed Dad Worried About His Child's Health

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I’ve been where you are — the glazed look in your eyes, the nearly zombie-like foot shuffle, the Lord-knows-how-old crust on your t-shirt. You’re the dad on day four in the hospital after your child’s most recent heart surgery. I see you standing in the cafeteria, meal ticket in hand thinking, If I eat another chicken salad sub, I’m gonna lose my freakin’ mind.

Dude, I’ve been you. This post is for you, whether you’re shuffling through the hospital or doing it at home. I know this life is a challenging one, but we have to remember to take care of ourselves. Obviously our little heart warriors get a lot of attention; they need that attention. There’s meds to be given, tube feeds to administer, appointments to attend and futures to fret over. The reality, though, is that we might be killing ourselves with stress.

There’s been a shift in healthcare toward more non-traditional, holistic styles of healing – or integrative therapies, as they’re sometimes called. Honestly, they weren’t anything I thought about until the last year or so. My job has exposed me to several of these therapies, and I think they’re a great thing for the healthcare system and for us as heart parents. So here’s a few I suggest for you dads:

Try healing touch.

According to the Healing Touch Program website, “Healing Touch is an energy therapy in which practitioners consciously use their hands in a heart-centered and intentional way to support and facilitate physical, emotional, mental and spiritual health.”

I’ve tried healing touch twice and whether or not the results were all in my head, it worked splendidly. We recently had some healing touch practitioners at work and I sat down for a 10-minute “centering exercise.” I sat in a chair and the practitioner put her hands gently on my head, neck and shoulders, encouraging me to breathe and listen to some soothing sounds on a radio. After 10 minutes, I felt completely relaxed, focused and rested.

Some hospital employees take classes to become healing touch practitioners, so ask around to see if someone can offer you a 10-minute session.

Try aromatherapy.

It’s amazing how you can just put a cotton ball in a little cup, add a few drops of essential oils to it, put it next to you on your desk and try to get your heal on. For example: Is stress making you feel nauseated? Try a few drops of ginger essential oil, which might help settle the digestive system and stimulates appetite. One day I was feeling extremely sick to my stomach at work and needed to stick through it to work a particular event. I sat at my desk with some ginger essential oil and felt better in no time. There are so many great uses for aromatherapy, and I encourage you to research them more on your own. Look into soothing fragrances like bergamot, lavender and vanilla.

Practice deep breathing exercises.

I’ll never forget one psychology professor’s advice about breathing exercises to reduce stress.  She said, “If you’re waiting on that big job interview one day and you’re freaking out, just close your eyes, take a deep breath through your nose and release slowly through your mouth.” I’ll never forget it because it works. Taking a few moments to focus on your breathing can really help relax you and relieve some stress.

An exercise that I found works great is to breathe in slowly through your nose, counting to four.  Then hold it for two or three seconds and release slowly through your mouth for another count of four. If you close your eyes and do this a couple times, you’ll be amazed by how relaxed you can feel. Plus, you can do breathing exercises wherever you are: in your office, at home, at the hospital, in the car (don’t close your eyes for this one).

Rock it out.

There’s music that makes you happy, and there’s music that calms. I encourage you to let music set you free. If you’re going for a hospital stay, take some music with you. If you can’t do that, step away for a few minutes, lock yourself in your car and listen to some music. It’ll be a nice re-set for your mind.

Find a fun hobby.

Work, work, appointments, work, appointments, clean up barf, work, laundry, dishes, cooking, work, appointments, clean poop, work. We can run ourselves into the ground doing important things like this without making time for ourselves. It’s not selfish to have a hobby. It can be anything: play basketball, learn an instrument, collect stamps, learn to breakdance, master the unicycle, etc. A hobby is a better relaxing activity than watching Netflix (though that can be fun, too) because it stimulates you creatively.

For the last few months, I’ve been roasting my own coffee beans at home using a popcorn popper. I order the beans raw from a supplier, and when I want some coffee, I take my popcorn popper outside, roast the beans, and the next morning I grind up some super-fresh coffee. The process makes me happy, and when I drink a fresh cup and it tastes good, I feel accomplished.

But wait, there’s more.

Find out what might help you relieve stress and relax. Look into things like mindfulness and guided imagery.  Maybe acupuncture is for you. I know the life of a heart parent, heck any parent, is a stressful one. I’m not saying you shouldn’t be concerned about things. But for right now, you are your child’s best advocate and companion along this journey. The reality is, if you don’t stop and take care of yourself, you’re going to break down, you’re going to get sick, or worse. Don’t let your heart warrior go at it alone. Give yourself the best shot at success by taking time out for you.

chris perez heart family

A version of this post originally appeared on Half Heart. Whole Life.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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