Louise George

@louise-george | contributor
Louise is a mum to two little girls. Her eldest daughter was born with hypoplastic left heart syndrome and her youngest is heart-healthy. She blogs about parenthood and life as a heart family over at http://littleheartsbiglove.co.uk and is passionate about raising awareness of congenital heart defects.
Louise George

What Life Looks Like When Parenting a Child With a Rare Heart Defect

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. We want to hear your story. Become a Mighty contributor here .  

Louise George

Letter to Parents Whose Babies Have Congenital Heart Defect

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. 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 tocope 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.

Louise George

Why Caring for a Child With a Congenital Heart Defect Doesn't Make Me Superhuman

Being a heart mommy can mean being perceived sometimes as a bit of a super mommy. I’m often told, “You’re so brave,” “You’re so strong” and “I don’t know how you cope with it all.” And while it’s true that I try to be brave and try to be strong, there have also been many times when I feel anything but brave or strong, and I’m not entirely sure how I cope with it all either. I’m a heart mommy, but I’m not superhuman. I don’t have a magical strength that I was endowed with the day I first heard the words, “There’s something wrong with the baby’s heart.” If you’d seen me shortly after handing my child to a surgeon for heart surgery, you wouldn’t think I was especially brave either. Louise and her daughter. Being in intensive care with a child recovering from heart surgery is like being on a rollercoaster. There were moments when I didn’t want to ride it, but I had no choice but to carry on, hold on tight and hope we would get to the end safely. Being a heart mommy is exhausting, overwhelming and wonderful. The mixture of emotions sometimes feels so intense. Sometimes the emotions and thoughts whirl around in my head and it all feels too much. There have been times when I have felt almost unable to speak out of sheer exhaustion. There have been times when all I can do is focus on the next minute and take the next tiny step forward. The reminder that this moment will pass isn’t always comforting. I know the challenging times won’t last forever and will one day be just a memory. But I’m terrified of the thought that one day maybe all of this will be a memory and nothing more. And so I cling to the present and learn to live in the moment. The truth is I cope with the surgeries, the rollercoaster ride of intensive care, the exhaustion, the challenging moments and the day-to-day fear of the future because I have no choice. Without further heart surgery, my child won’t be able to survive into adulthood. Sometimes I cry and sometimes I get upset and want to rebel against this hand that we have been dealt. I would give anything for my child’s heart to be perfectly formed. And then I take a deep breath and remember just how thankful I am to have her and how incredibly lucky we have been so far. Sometimes I wonder where I will find the strength to take the next step, but somehow I always do. Sometimes I’m thankful for what this journey has taught me, for the strength that I have found and for the faith that has been an anchor throughout the storms. I have been amazed at how joy can sometimes be found even in the difficult moments. I have learned to appreciate the little things and be thankful for them. Living in the moment is hard at times and a blessing at others. I know how lucky I am to have my children and how different things could have been. I’m a heart mommy, but I’m just an ordinary mom, too. I can get upset with my children, and there are times when bedtime can’t come quickly enough. Being a heart mommy doesn’t make me a perfect parent by any stretch of the imagination. And when I feel overwhelmed by the demands that parenthood can bring, there’s also that underlying prickle of guilt and shame. I berate myself for my lack of gratitude. I know how lucky I am, and yet sometimes my actions don’t show it. But parenthood can be hard at times, and I’m only human. At night I look at my sleeping children and am thankful for another day with them. I might not live up to my own ideal of parenthood, but my children at least know they’re loved and that’s what really matters. And I go downstairs and take a deep breath, feeling thankful for a moment of peace and quiet. Who knows what tomorrow will bring, but for now I’m thankful for today. Another day with all the imperfections that family life brings. Another day of ordinary heart family life. I’m a heart mommy, but I’m not superhuman. I’m not amazingly brave or exceptionally strong. Nor do I have an extraordinary faith. I’m just an ordinary mommy, doing the best I can for my family and getting through each day as it comes. Follow this journey on Little Hearts, Big Love. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.  

Louise George

The Christmas We Spent in the Cardiac Ward With Our Daughter

The run-up to Christmas can be a stressful time: cards to write, presents to buy, parties to attend. So much to do. But four years ago, we could barely focus on the festive season. All around us it seemed everyone was excited about Christmas, but for us there was a huge obstacle in the way. Our 3-month-old daughter was about to undergo her second open-heart surgery. While everyone else seemed to be caught up in the hustle and bustle, we focused on family time and making memories. Enjoying the time we still had together and not knowing what the future would bring. While those around us were doing their Christmas shopping, we were praying in a hospital chapel, pacing the floor and trying to fill those endless hours while our baby was in surgery. Those last few shopping days before Christmas were spent sitting beside a bed on the pediatric intensive care unit as our daughter recovered from surgery. The biggest excitement on Christmas Eve was our daughter being well enough to move from intensive care to high dependency. We sent only a handful of cards. What little Christmas shopping we did was done in one afternoon when we managed to leave the hospital for a few hours. When I woke up on Christmas morning, I found a stocking next to my daughter’s bed with a few small gifts from Santa. My hubby and I had not been forgotten, either; there was something for each of us. Just a small present but it meant a lot. We spent most of Christmas Day with our daughter. She gave us the best gift ever that morning: the first smile since her surgery. Being able to enjoy cuddles with her again after over a week of not being able to hold her at all was utterly blissful. Hubby’s parents came to visit, bringing Christmas dinner with them. We had been given the key to a friends’ house. They were away for Christmas but invited us into their home so we could enjoy our Christmas dinner in comfy and cozy surroundings. A brief time to step away from the hospital routine and recharge our batteries. Later that evening, another friend visited, bearing presents and food and taking time out of her own family Christmas to help make ours better. We weren’t surrounded by machines, tubes and wires; we were surrounded by love and prayers, family and friends, thoughtfulness and kindness. I learned more about the real meaning of Christmas that year than in all the other Merry Christmases I have experienced since. I learned it didn’t matter where we spent Christmas; the fact that we were together was really all that mattered. I learned just how kind and generous people could be. I learned the best gifts were those that money could never buy: a smile, a cuddle and the love and support of family and friends. I learned that Christmas didn’t have to be perfect to be magical. As long as there was love, there would be magic. I learned to be thankful for what I had, to enjoy the moment and to focus on the things that really were important. Being in hospital wasn’t where I would have ever chosen to spend our first Christmas as a family, but the memory of it is a beautiful one. There was love, there was joy and there was magic. We had each other, and, therefore, we had everything. Follow this journey on Little Hearts, Big Love. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness during the holiday season, and what would you say to teach them? 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.

Louise George

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

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. Follow this journey on Little Hearts, Big Love.

Louise George

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

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.

Louise George

What Being a Heart Parent Is Like

It took just seven words to change my entire life. Seven words that broke my heart, shattered my dreams and turned my world upside down. Seven words from which I emerged a stronger and more compassionate person. “There’s something wrong with the baby’s heart.” In that moment, I felt fear colder and stronger than any I’d ever known before. In that moment, I knew I would do anything I could to save my child’s life. In that moment, although I could barely grasp it, I became a heart parent. I learned to hold on to hope and faith when there was nothing else left to do. I learned to live in the moment and find joy in the darkest of times. I learned to put my trust in the skilled hands of those who were caring for my child. There were many moments when all I wanted to do was run and hide, to pretend this wasn’t happening. There were many moments when the fear of the future felt overwhelming. There were many moments when it seemed the only thing that kept me going was hope and the love, support and prayers of those around me. This is what it means to be a heart parent. I’ve looked at the huge hands of a surgeon and marveled that they can perform such intricate surgery on something the size of a walnut. I’ve sung my child to sleep in the anaesthetic room of an operating theater. I’ve handed my child to a surgeon, knowing that they will stop my child’s heart and prayed I will see my child alive again. I’ve spent hours pacing the corridors of a hospital while my child undergoes life-saving surgery. I’ve spent hours sitting in intensive care listening to the endless beep of machines. I’ve spent hours holding my child in my arms, thrilling at the joy of being able to do so. I’ve learned that miracles can and do happen. There are many moments where my feelings as a parent seem to be amplified: Anxiety whenever my child is unwell. Guilt on those challenging parenting days that come to us all – those moments when bedtime feels like it can’t come soon enough and I feel guilty for not enjoying the moments I know I’m so blessed to experience. Joy and pride in all the little milestones that suddenly become extra special because of the journey it has taken to achieve them. The road has been rocky at times, and there might be many dark moments still ahead. I do not know what the future holds, and I do not dare to try and look ahead. This is a road I would have never willingly chosen to walk, and yet I know I would walk it all over again for the joy and blessing of having my child with me. I’ve discovered a faith that has helped me to endure throughout the dark moments. I’ve discovered a strength I never knew I possessed. I’ve discovered a love stronger than anything this journey can throw at us. This is my life. This is our journey as a family. This is what it means to be a heart parent. Follow this journey at Little Hearts Big Love. The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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.