Mother's Day Reflections: The Valor and Vitality of Heart Moms

When Hope's first breaths were intertwined with the whispers of uncertainty, my world changed. As a heart mom, each Mother's Day is not just a celebration but a milestone, reflecting the grit and grace it takes to raise a child with a congenital heart defect. Join me, Anna Jaworski, in an episode where we explore the deep emotional landscapes of mothers like me. We'll traverse the highs of motherhood, the lows of fear, and the battles that come with CHD, all through the lens of Mother's Day. Discover how stories of resilience echo through our community, offering wisdom and celebrating the spirit of heart moms everywhere.

This episode isn't just about my journey; it's a chorus of voices from the heart mom community, sharing their own powerful narratives. Together, we recognize the role of pediatric cardiologists and the medical community in bolstering our strength, and we honor the courage required to let our children forge their own paths. Hear from fellow heart moms as they speak candidly about their experiences—moments of profound loss and the critical importance of support systems. It's an ode to the unwavering courage of families facing CHD and a beacon of hope for those who will join our ranks. Celebrate Mother's Day with us, and feel the solidarity of heart moms united by love and resilience.

Special thanks to Hollie Stephenson, Regina Lawrence, Sheri Turner, Eileen Pearlman, Victoria Baerg, and Kimberly Russell for sharing their experiences, memories and/or advice with us.

Sites or shows mentioned in this episode:

Hollie's show: https://www.buzzsprout.com/62761/14985018
Baby Hearts Press: https://www.babyheartspress.com/

Become a subscriber: https://www.buzzsprout.com/62761/support

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Chapters

• 0:00 H2HwAnna 2024 Mother's Day show
• 6:02 Segment 2
• 17:09 Segment 3
• 19:42 Eileen's Story
• 20:17 Victoria's Story

Transcript

Speaker 1: 0:54

Mother's Day and CHD are forever linked for me, because it was in fact the day after Mother's Day in 1999 that I first became part of the CHD community.

Speaker 2: 1:13

Welcome to Heart to Heart with Anna. I'm your host, anna Jaworski, and I'm a heart mom to an adult who was born with a congenital heart defect. Mother's Day has made me feel nostalgic about my own motherhood journey. I've decided to devote today's episode to Mother's Day and motherhood in particular. 33 years ago, I was a teacher at Texas School for the Deaf, eagerly awaiting the arrival of my first child, even though I had struggled to conceive. My students were thrilled for me and even threw me a baby shower. After my son, joey, was born, I went back to visit my former students, who were excited to meet him. Little did I know that just a few years later I would have another baby, one who would need to learn sign language after open heart surgery damaged her vocal cords. Being a heart mom has made my path to motherhood uniquely challenging, but also incredibly meaningful. For this Mother's Day episode, I wanted to hear from other heart moms about what this holiday means to them. I asked several friends to share their perspectives, and I'll be passing along their thoughtful advice later in the show. But first let me tell you a bit about my own experiences navigating motherhood as a parent of a child with a congenital heart defect.

Speaker 2: 2:30

Many of my long-time listeners have older children or even adult children, like I do. We veteran heart moms often had babies born listfully, unaware that there was an invisible condition threatening to steal our babies away from us. That was the case for me. From the moment our baby was born, frank told the doctor something was wrong. The baby received an 8 and 9 APGAR score and it appeared Frank worried for nothing. Later, when the baby was brought to me to nurse, there was no activity whatsoever. You have a sleepy head on your hands. The nurse whispered to me. She thinks she's still inside you. But after we left the hospital and went home, I still had difficulty rousing my baby to eat. All she wanted to do was sleep and breathe that deep breath that scared Frank the moment she was born. That's newborn breathing, we were told. But we grew concerned as we marked days off on the calendar and the breathing only seemed to get worse.

Speaker 2: 3:29

For the first 10 days of her life I took Hope back to newborn follow-up every other day because I was concerned how yellow she was up. Every other day because I was concerned how yellow she was, but she was never yellow enough for the billy lights. She never woke up crying not for a wet diaper and not due to hunger when she nursed it would be for about five minutes and then she'd be asleep on me. I talked to three different lactation consultants, who taught me the baby doll hold the football hold and who encouraged me to put a wet washcloth with cold water on her body. When she started to fall asleep I felt I was torturing my baby because she would startle and then latch on to me again, performing several frantic sucks before falling back asleep. I had to set an alarm every three hours because I knew she needed nourishment even if she wasn't waking up demanding it.

Speaker 2: 4:24

Frank was an emergency room nurse and the children and I would sometimes take him dinner. Every time we visited, frank pulled aside trusted doctors or nurses and asked them to look at our daughter. Something's wrong. Frank would insist, but his colleagues would ask me what the pediatrician said. She said that Hope is petite like me. I said They'd nod and they'd go back to work until one night when a doctor paused and kept staring at Hope as she slept. When do you see the pediatrician again? He asked me she has her two-month-old baby checkup in three days. I replied she should be okay until then he said I wanted to believe that everyone else was right.

Speaker 2: 5:06

I didn't want to believe something was wrong with my baby. Both Frank and I knew in our hearts and in our guts that something was wrong. I simply had no idea how very wrong things were for my daughter. Hope. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement. Embark on a heartwarming odyssey with Baby Hearts Pressure Gateway to uplifting stories for the CHD community. Introducing the Heart of a Heart Warrior book series inspiring those born with heart defects and their loved ones.

Speaker 2: 5:55

Discover the heart of a mother the heart of a father and my brother needs an operation. Books celebrating strength, love and familial support. Visit babyheartspresscom and be part of our loving community. Uplifting hearts one story at a time.

Speaker 3: 6:13

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Speaker 2: 6:31

Three days elapsed and it was time for the doctor's appointment. My sister Chrissy, my niece Megan, the children and I were going to meet for lunch after the appointment at our favorite Mexican restaurant. I wore a new sweater and was eagerly looking forward to our day. The pediatrician took Hope's clothes off and asked the normal questions. I repeated my concerns about her not waking up, crying and me having to force feed her by using the wet washcloth method.

Speaker 2: 7:01

I was worried about her jaundice, but she was never yellow enough for the billy lights and Frank was still worried about her breathing. The pediatrician examined the baby with her back to me and nodded at everything I said. Then she told me to dress Hope and come back when it was time for her to get her immunizations at four months of age. There's one more thing I said. After I was done dressing Hope, the pediatrician looked up from where she was taking notes. Remember how I told you Hope never wakes me up crying. The pediatrician nodded. Well, this morning she woke me up, but she wasn't crying, she was grunting, grunting. The pediatrician asked Well, I don't know how else to describe it, but yes, she seemed to be grunting. The next thing I knew, she snatched the baby out of my hand, stripped her of her clothes and had a stethoscope pressed to her chest. Alarmed, joey came to my side and held my hand, both of us transfixed by the pediatrician's movements. Finally, she turned around and faced me. I'm admitting her. She said flatly what I said, in shock. How can you admit her? I demanded. Just a moment ago you told me we could leave. I know she said, handing the baby back to me, you can dress her again, but I'm admitting her. What's her diagnosis? I asked? Failure to thrive, she said, and I felt as though I'd been slapped in the face. No, I said. That's babies who aren't loved. That's not my baby. I could feel tears stinging the back of my eyes threatening to spring forth. That's also babies who have a critical illness, she said softly. Hope has never had a fever, never vomited or had diarrhea. I said she's never been ill. The doctor wouldn't look at me. I held Hope in my arms with Joey by my side and walked over. So she had to look at me. I have to know what you think is wrong with her. I insisted. I'm not sure she hedged, but I think she has cystic fibrosis. And with that she left the room.

Speaker 2: 9:13

It was 1996, years before cell phones and the internet were available to the general public. Frank was at work, my sister was waiting for me and I suddenly felt as though the rug had been ripped out from under me. That night, hope and I were on the fifth floor of the hospital when the change of shift occurred. A new nurse, vicki, introduced herself to me, an experienced nurse. She asked me why we were there and then asked me what the x-ray had revealed. She hasn't had an x-ray. I said no-transcript. She watched Hope's head bobbing against my chin while I patted her on the back. Does she always breathe like that? She asked me. Yes, only it's getting worse. Frank has been worried about it since the minute she was born. Now you can see a cleft in her chest when she breathes. The nurse nodded and then a resident came in the room. That baby has a heart or a lung problem. She informed the resident she needs a chest x-ray. We have her scheduled for a sweat test in the morning, he said. Looking at Hope's chart, the nurse pulled the doctor into the hallway and then came back in our room and said Hope was getting a chest x-ray. The next morning the resident rushed into Hope's room and threw an x-ray on a light board. Now we know what the problem is, he announced.

Speaker 2: 10:37

I looked at the film with bleary eyes from lack of sleep. I had no idea what I was looking at. Finally I pointed to a blob and said Is that her heart? Yes, he said it's not supposed to be that big, is it? No, he said Everything moved fast.

Speaker 2: 10:55

After that they conducted an echo on hope while I was nursing her, to keep her still so they wouldn't have to sedate her. And then we were about to be packed into an ambulance when the pediatrician showed up. Now we know what's wrong, I said to the pediatrician. She had tears in her eyes as she nodded. We're going to San Antonio, but we'll be back, I said, comforting her. She shook her head and looked down. Later I would discover that none of the doctors at the hospital believed help would even survive the transport, much less that she would be back.

Speaker 2: 11:27

The doctor who had overseen the echocardiogram had prepared Frank for the worst. Luckily for me, my husband decided to keep that information to himself. In San Antonio, after more testing, we got the diagnosis Congestive heart failure and hypoplastic left heart syndrome, a heart too defective to sustain life. If she were my daughter, the cardiothoracic surgeon said I'd take her home. For what little time she has left.

Speaker 2: 11:56

Thus began the biggest battle I had ever fought for my child. Doing nothing was not an option. What about a heart transplant, I asked. She's in congestive heart failure. She won't last long enough to get a heart has to be something we can do for her. What if you used my heart.

Speaker 2: 12:16

At this point the surgeon looked at me with great sympathy and kindness. You're going to need your heart to take care of your family, he said gently. My heart won't be any good to me if Hope dies. I said Well, there is an experimental procedure. The surgeon said Well, take it. Finally a glimmer of hope for me to hold on to. What does being a heart mom mean to me? It means learning to appreciate every moment with my children. It means learning how to be a stronger advocate than I ever thought I could be. It means harnessing that tiger mama in me and fighting for my child's survival. But it also means more than that. It means being a member of a bigger community. It means understanding what another set of parents have gone through when they hand their baby over to a surgeon, knowing they may not get their baby back. And it means knowing the joy of having another day get their baby back. And it means knowing the joy of having another day, another kiss, another hug.

Speaker 1: 13:23

Now let's hear what some other heart moms have to say about being a heart mom this Mother's Day. Hello, this is Holly Stevenson, mom to Tom, who is a 25-year-old PLE Fontien diagnosed with HLHS 25 years ago. Tomorrow, mother's Day and CHD are forever linked for me because it was, in fact, the day after Mother's Day in 1999 that I first became part of the CHD community. So today I want to share some thoughts for future heart moms people who are going to find themselves in that office with their doctor being given this news that might seem devastating and just a few thoughts on what to do. This morning I looked at Facebook and there was a little memory of Tom last day with his pediatric cardiologist five years ago, and some of the things that I wrote in there about his cardiologist I think are things worth sharing with future heart moms. So the first thing is get connected to other people who are going through what you're going through positive people who have good outcomes and good stories and get connected into a good care team.

Speaker 1: 14:31

Our pediatric cardiologist helped me feel really confident caring for Tom at home, because it was a lot when he was a baby between feeding tubes and appointments and watching all of his heart things. It was a lot and he really did help me feel confident. And then he encouraged us to let our rowdy toddler at his own limit. When he got into elementary school he said yes to Little League, he said yes to track, and he reminded us that Tom would find his way for those things and that it was important for him to be able to try and enjoy these things just like everyone else.

Speaker 1: 15:03

When Tom was a teenager, he knew it was time to give him a voice in his own treatment. He trusted us with his cell phone number. He talked and texted us through different situations over the years and when things got a little complicated with Tom, he was humble enough to support us in seeking some treatment for what Tom had going on out at Children's Hospital of Philadelphia. His influence on our lives, as well as the influence of different nurses and doctors that we met over the years, are so huge in the man that Tom is today. So future heart moms, it's a lot, but there's a lot of hope, and if you can get yourself connected with a fantastic team, you're going to have your best shot at having your best life with your heart child.

Speaker 2: 15:47

I loved interviewing Holly recently for an episode of Heart to Heart with Anna because, like me, she's a veteran heart mom. But it doesn't matter if you've been mothering a child with a CHD for decades or just months. We all have valuable advice and stories to share. Here is Regina Lawrence, mom to three-year-old Aubrey.

Speaker 4: 16:07

Happy Mother's Day and I hope you enjoyed your day, especially being a hair blither. I understand it is not easy to be a hair blither Because you are taking care of your child as a daughter, maybe putting that pulse ox on, listening to their heart, making sure they're not turning blue. Make sure they're not turning blue, make sure they're not retracting everything because they're going into heart failure.

Speaker 4: 16:42

You are an awesome hairball, doesn't matter if you have lost your child due to a heart condition. You should be thankful for your child due to a heart condition. You should be thankful. The child made you a mother. You gave that child life. You birthed that child.

Speaker 3: 17:18

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hug Podcast Network. Hearts Unite the Globe is a non-profit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Speaker 2: 17:55

Home Tonight Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

Speaker 3: 18:10

Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazoncom, Spotify.

Speaker 2: 18:20

I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects.

Speaker 3: 18:26

Enjoy the music.

Speaker 2: 18:27

Home Tonight Forever. Regina is so right Just by virtue of the fact that we have birthed a child. We are blessed. I met Sherry Turner way back in the 1990s, when she had me fly into Boston, massachusetts, to speak at an event that she was hosting. I have always been inspired by Sherry's strength and dedication to her son and to making sure that her son is never forgotten. Here is Sherry in her own words.

Speaker 6: 18:55

Hi, this is Sherry Turner, mom to Thomas William Turner, who was born November 11, 1997, and passed away November 21, 1997. In terms of what it means to be a heart mom, but what it means is that, even if I don't get to see solutions for my son's problems, I contributed to improving the lives of another heart child Veteran heart mom Eileen Perlman wrote to me being a heart mom means that I see the strength and fragility in a person at the same time.

Speaker 2: 19:54

It connects me to others who have lived a similar experience and makes me realize that I am not alone, nor is my daughter. When my daughter was born almost 41 years ago, I knew very little about congenital heart defects and have learned not only about my daughter's heart condition but many of the CHDs that affect so many babies and children. My dear heart mom friend, victoria Berg, told me what does being a heart mom mean to me? Being a mom obviously comes with the immense responsibility of providing for and keeping a tiny human alive until adulthood. With a heart child, this has an entirely different and intense sense of responsibility. Keeping that child alive literally means just that. Keeping that child alive literally means just that Having to learn the ropes of hospital life, of tube feeds, medications, surgeries, lifelong medical care and if you're lucky and thankfully most are nowadays you have the responsibility of teaching your teen to transition to adulthood and being responsible for their own health care. That letting go stage has been one of the toughest things to go through. Learning to not nag about appointments is not easy, but with time and open communication it does get easier, as do all difficult things with time. Being a heart mom has been a journey I never expected, but has taught me so much and has given me the gift of being part of a wonderfully supportive community of which I have made some lifelong friends. My advice to new families is to stop, take a breath and then just love that baby.

Speaker 2: 21:38

The heart defect does not define your child, although it will affect your child's life. Try not to hold your child back from trying things. Let your child figure out what does or doesn't work for them. Yes, easier said than done, but it is important for them to have some autonomy. Seek out support from the heart community. It's so easy now compared to when my son was born. Family is a wonderful source of support, but talking to someone who has been there, done that is so helpful. And most importantly is self-care. If you don't take care of yourself physically, mentally and emotionally, you will not be able to care for your heart, baby and family. It is not selfish for you to say I need a break.

Speaker 2: 22:22

Take up people's offer to help and be decisive about what you need help with. Don't be afraid or embarrassed to ask. Everyone needs help sometimes. That's what community is all about. Relish in that. The last friend I will share with you today has advice not only as a mother, but as a heart warrior herself. Kimberly Russell was one of the first adults I met who was born with a heart defect, Born just a few years before I was born. I have always looked up to Kimberly with a sense of awe and admiration. Here's what Kimberly wanted to share with all of you.

Speaker 5: 23:02

Encourage and allow your children to be as active as possible. If you're unsure of an activity, ask the cardiologist. Sometimes the disease may become overprotective and hurt the child from being an independent adult, which we all strive to be. Never be afraid of calling the cardiologist. They want you to be confident for the care of your child. Keep a notebook of record so that if there is ever a situation that someone else has care for a child, they have the critical information needed, something that can be a quick check that a doctor or someone might need care for your child. Thank you for the work that you do for your child. They love you and appreciate it far more than they can ever say.

Speaker 2: 23:56

I loved hearing Kimberly say that our children will love and appreciate what we have done for them. One of the things that concerned me when Frank and I decided to move forward, knowing our child had three scheduled open heart surgeries, was that we knew that that may not be all she needed in order to stay alive. The more we researched, the more we discovered possible potentialities. Pacemakers, icds, arrhythmias, ablations, catheterizations and perhaps even a transplant were all on the horizon. Would our child hate us for putting her through so much? I wanted to know that she would know that whatever choices we made, we made them with loving hearts. We wanted her with us and we had to believe that medical technology would stay a step ahead of her. I believe that God gave me hope in a new mission in life, and a big part of that mission was helping her to be what God intended, whether she was with me for days, months, years or decades intended. Whether she was with me for days, months, years or decades. I want to thank Holly Stevenson, regina Lawrence, sherry Turner, eileen Perlman, victoria Berg and Kimberly Russell for sharing their Mother's Day thoughts with me. All of these ladies have helped me view my passage of time as a heart mom through a very special lens. Sherry and many of my bereaved friends have underscored for me the importance of cherishing each day and not forgetting those who have passed away too soon. Thanks to my bereaved friends, I'm not afraid to reflect on how loved ones can still be part of our lives when we have to move forward without them being physically present with us. Thanks to friends like Holly, regina, eileen and Victoria, I value the kinship we share in being heart moms and in leaning on one another when times are difficult and cheering with one another. All of our children's victories, no matter how small, kimberly and my own daughter have helped me. Value my own part in helping help make it to adulthood. Because of the many wonderful adults I've come to know, I have great hope for the future and believe that I've been given a tremendous blessing to be part of this very special community.

Speaker 2: 26:18

I hope you, my dear listeners, have enjoyed this episode of Heart to Heart with Anna. Please tune in next week when I'll be interviewing James Robinson, author and father extraordinaire. Until then, please leave a comment on Facebook, instagram, YouTube or TikTok. We value your thoughts and comments. If you would like to read more by Hope or Kimberly, please check out the Heart of a Heart Warrior at the Baby Hearts Press bookstore. And if you would like to hear more stories from mothers, please check out the Heart of a Mother at the Baby Hearts Press bookstore. Thank you, my friends, and remember you are not alone.

Speaker 3: 27:01

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.