CHD Awareness Week: Being a Heart Mom

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February 7 through February 14 is Congenital Heart Defect (CHD) Awareness Week. Many people have heard the words, but do they truly understand what it means or how it affects the lives of those who are faced with it? One in 110 babies are born with a congenital heart defect. Congenital heart defects affect more children than any other defect, yet the money raised for it is only a small fraction that is raised for other defects and diseases of children.

I am a “heart mom” myself, but I wanted you to hear from other moms who have had their worlds turned upside down because of congenital heart defects. We want to share with you what being a heart mom means:

CHD Awareness Week: Being a Heart Mom

“I never knew what CHD was or that it even existed, until I found out at 23 weeks of my pregnancy. I was told my son was going to have open-heart surgery at five days old—OPEN-HEART SURGERY!—and that he was going to have another one at six months old and then another one at two years old. I carry his heart in mine now and I represent him.” –Sonia R.

“I wish every parent knew how common CHD’s are and that they can happen to anyone. I wish they knew that talking about my son doesn’t make me sad. I won’t dissolve into tears. Talking about him make me happy. They don’t understand that my memories and the pictures I have are all I will ever have of him, and I love nothing more than to share those memories. They keep him close to my heart and renew those memories every time I talk about him. I wish non-CHD parents knew how little funding actually goes towards research, especially considering it is the number one cause of infant deaths in the US.”  –Sandra K.F.

“A nurse grabbed the paddles, ready to shock her if necessary, and I think my own heart stopped. I stood motionless in the back of the room as my parents and husband looked through the window. They ordered a dosage of medicine and one of the attending doctors looked at the other and said, ‘You’d better tell mom what’s going to happen so she doesn’t lose it.’ They said they were about to give her a drug called Adenosine—it would stop her heart and restart it. It was the only way they could get it to slow down. The doctor said to me, ‘Mom, she is going to flat line, but it will be okay.’ And she did. And it was. I never cried, I never screamed, I never moved. I just prayed.” —Angela B.

“Every time surgery comes, it takes everything you have to stay strong and remain standing because all you want to do is fall apart, but there isn’t time. You watch your precious child struggle through unimaginable struggle, which no adult could survive, and yet somehow they do. And then your worst nightmare becomes your new reality. Your child loses their fight.” –Sandra F.K.

“One of the surprises for me was how much medication my son came home with. I was giving meds 13 out of the 24 hours in a day. Some of the medications I had to give had to be checked by another nurse in the hospital (for correct dosage). No one was checking me at home!”—Becky P.

“Being a heart mom means we are never off, although I know no mom really is ever off. But we look at our child and study every little detail and the tiniest of changes or differences with the eyes of a very seasoned detective. We are often waiting for the other shoe to drop, because it often does…many times. We know our child’s medical history better than any of our doctors. We know what to pack for hospital stays. We bond instantly with other heart moms. We often feel alone…especially at the beginning. Only other heart moms know how we feel. Our partners and parents can be awesome, but only other moms truly get what it is to know your baby or child’s heart is not healthy. We worry about insurance and medical bills, but don’t ever think of not doing something because of getting into more debt. We know more medical terminology than first year med students.” –Kristin B.R.

“I did cry that night. And I did feel scared and helpless. Being a heart mom is a very difficult thing to be. While Ava was on the heart transplant list, I imagined a life of anti-rejection medications and doctor appointments. I spent a lot of time doing research on children with heart problems that lived normal lives. I prayed that we could have gotten there. It just wasn’t meant to be. The one thing I will say is that when you are a heart mom, you live on the edge. Life can change in an instant and you can take nothing for granted. I learned from my Ava to appreciate every moment and be grateful for the time I had with her. I was lucky to have it. Because being in the Pediatric ICU makes you realize that not everyone is so lucky.”—Angela B.

“We offer to help other heart moms, we want to share our story and help moms get through their journey. We get angry, sad and so scared, but we turn all that off when our child is in the room and dance for them if it will help. Some of us carry our babies into the operating room, hold our babe while they are sedated, and then kiss our baby and leave the room all without missing a beat….then we lean against the wall outside that room in our silly paper OR uniform and shake from our sobbing. We are strong, but no stronger than anyone else…we just do what we have to do. We hold our toddlers down, while they are poked and prodded, and sing silly songs, while our hearts ache for our child.” –Kristin B.R.

“I have learned through my heartache how to cry and laugh at the same time. I know my faith has helped me so much and it has helped my marriage even more. I wanted to show my son that he had a purpose in life and that it was NOT to bring sadness into my life. My son is NOT my sorrow, but my everyday joy. Through him I have given back to our CHD community. I have raised money in his memory in order to help other heart families. I also have collected toys to take back to children’s hospitals in his memory.”—Sonia R.

 

Being a heart mom means educating yourself on all the signs and symptoms of decreased oxygen saturation. It means looking at nail beds and lips for signs of hypoxia. It means learning terminology, medications, feeding tubes and sometimes dialysis.

Being a heart mom means preparing yourself to pick up and head to the children’s hospital at the drop of a dime, never knowing when that moment will strike or what the future holds.

Being a heart mom means driving hours to the hospital for scheduled appointments, labs, procedures and surgeries, and sometimes staying there for days.

Being a heart mom means when you’re sick, you have to wear a mask because you can’t risk your fragile child getting sick.

Being a heart mom means knowing one day you’ll have to tell your child they can’t play sports, their immune system is weak, they may never bear children, they have to have major surgery and that they are very sick.

Being a heart mom means sometimes feeling very alone. Feeling like no one can relate. Feeling like you must put on your “strong face,” a mask of smiles.

For many heart moms, it means loss; planning a funeral-a burial site, a tiny casket, a headstone, a burial outfit, planning a speaker, music and more.

Being a heart mom means to forever try to make a difference, for the sake of our child.

For all heart moms, our lives change forever….

Kristina_HornerKristina Horner and her husband have three children, and are expecting their fourth child in the spring of 2014. Their second child, Annika, died of multiple heart disorders when she was just 48 days old. Kristina always wanted to be a mother and loves being one, but what she didn’t anticipate was the roller coaster ride that her journey has included. She shares her story on her blog Heartfelt Journey, hoping that her story will help or inspire someone else that is going through something similar.

{Photo credit @iStock.com/slovegrove.}

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17 thoughts on “CHD Awareness Week: Being a Heart Mom

  1. For a year I worried that my only son would die.. His CHD left hims without the strength to nurse, so we tube fed him. He would gain a few ounces one week only to loose it the next. He was happy, but couldn’t play like other babies. The day he had his open heart surgery is the only day I cried. I just did not have the time to allow myself to break down until that day. Once the surgeon came out and told me the VSD was mostly closed and with time perhaps the hole would completely I knew that things would be alright. Today my son is 26 years old, 6’2, married, and in the Coast Guard. At the darkest days I wondered if he would survive until strong enough for surgery. Today his future is bright. 26 years ago there was no support group for heart moms. I had the hope that only comes from a deep Christian faith and an army of friends.

    1. Thank you so much for sharing, Catherine. I can’t imagine what that time must’ve been like for you 26 years ago. But what a blessing that he is now healthy and strong and even serving in the Coast Guard. What an amazing miracle!

  2. Our world changed drastically when we found out our 3 day baby had to be life-flighted. Our lil man went from being at deaths door multiple times to being a happy, healthy 3 year. We are beyond blessed to have him in our lives.

  3. Our journey began late. We didn’t know until he was already 7 months old. It was the day after Christmas 2011 when I took my son, Danny to the ER for a rash. We’ve since called it our “Miracle Rash”. My son’s condition was discovered because during vitalizing him, they couldn’t understand why his pulse ox was so low. I watched as the medical team converged on him, trying to get an IV started. I watched my son get poked at least 8 times, I even asked if they could give him a break,he was crying so loud, but they said no. They needed a line. They gave him morphine once they finally got an IV started. They then did an echo, and then turned my world upside down. I kept thinking, “I went in for a rash, why are they talking about his heart?” Since then life has never been the same. I’m actually writing this while in the PICU. My son is recovering from his 3rd OHS. We’ve been here for a month so far. It’s amazing what we, heart moms/families go through but it’s nothing compared to our little warriors themselves. I’ve told my husband, my son is going to hate the word “OK” when he grows up. Because every time I say “everything’s OK”, something’s about to happen. This journey we’ve been on, has been unreal. Sometimes I can’t fathom how we’ve gotten this far. How many obstacles, illnesses, Cath’s, surgeries, we’ve been through and it’s still not over. At the beginning, it was a dark place. But having faith has definitely kept me as calm and sane as I can be. Sometimes prayer is all we have. So many times, our child’s well being is out of our hands. For a mother that’s an unnatural feeling. There is hope though, there is always hope. I know my son will be not just be “ok” but great. 🙂 I don’t have the energy or time to waste on negative thinking. I have to stay strong for him. He looks to me for comfort and reassurance and until God says “when”, I’m going to be his rock. God bless our babies and the all people who’s lives they’ve touched. They and God are amazingly awesome.

  4. Thanks for sharing. I am a heart mom amd its nice to read articles like this promoting awareness . God bless all the heart moms & dads out there as well as siblings. I have include siblings my heart baby has a twin and 3 older siblings who went through a lot as well as he was going through surgeries. As a matter of fact his 2 oldest siblings were donating blood at the exact time he was receiving his first transfusion. He is happy and healthy now and almost 4 years old. God has blessed our family in so many ways. Stay strong heart “families”.

  5. Our son had his first open heart when he was 5. I used to think why him? Why would he have to go through so much? Why not me instead? There were times the only place I could cry Was the car, when I was alone. People would tell me he would be fine but that almost made it worse, because, no one can really tell you that. It is hard for people to relate what open heart surgery means. Having to stop your child’s heart so they can operate…is hard to wrap your mind around. Sometimes you feel alone.What about the feeling of dread before every echo? What if they find something again? He has had 2 more surgeries since then and facing a percutaneous replacement in a few wks. He is only 22. I did find a career out of all this. Went back to college and got another bachelor’s degree, only this time in nursing. So I can make a difference in other peoples lives, just like that first nurse who took care of my son.

  6. To all the heart mom’s out there, thank you for the strength to know I can someday do this. My son is 13 and was told a few years ago he couldn’t play contact sports because of his CHD and that’s really tough when that’s all they want to do to be normal and be with their friends and peers. It breaks my heart to watch him struggle to really understand why he can’t when he really wants to do….I am very fortunate that I have him here with me and haven’t had some of the struggles and sadness many other heart parents have had…but you heart moms give so much of your heart to help us other heart mom’s thank you!

    1. My Daughter had her 1st open heart surgery at 4 and again when she was a junior in high school.i know exactly how you feel about all the anxiety with each appointment. She is having a 3d echo tomorrow and will find out if a 3rd surgery will be necessary. I’m am dreading this appointment tomorrow and can’t think about anything else. She is 21 now and has had to take a leave from college for health concerns. I too feel like no one can relate to my situation. Between fighting the insurance company for coverage or fighting my company for time off it is very stressful. No one understands unless you are a parent yourself in the same situation. I have to keep my head up for the sake of my daughter but at times it is very hard. I wish the best to you and your son in the future.

      1. Thank you, Teresa, for stopping by and for sharing a bit of your story. You and your daughter are in my thoughts and prayers.

  7. My husband and I had no idea how our lives would change on a summer day 29 years ago. We have described our journey many times like going on a trip, taking a detour and never getting back to the main road. Our daughter, Jaycee was born with tetralogy of fallot with pulmonary stenosis. Her first cath was at 10 weeks and the first surgery at 3 months. She has had 6 open heart surgeries and 20 other procedures. She has a aortic homograph piece in the pulmonary position, shunts that were connected and disconnected on both sides, 6 stents, melody valve, ICD (internal cardiac defibrillator),two covered stents, and an ablation procedure. I wanted to tell you this to encourage you and give you hope. In 2008 our daughter graduated from the University of Oklahoma and has been married for five years. It has been a joy to be a Heart Mom. My husband and I consider every day a gift from God and enjoy our special blessing.

  8. February 7th to the 14th is Congenital Heart Defect Awareness Week.
    Sometimes babies die because they are sent home with a heart defect no one knows about.
    My baby was sent home with a heart defect. For nearly two months we did not know.
    Our ultrasounds said, “possible hole in the heart” and my obstetrician said, “They will look at his heart before you take him home.” LOOK at it…
    Two pediatricians saw Adam before we left the hospital. They listened to his heart but they did not look at it. We stayed one night and went home.
    Adam was a sleepy baby, I knew some babies were hard to wake, so I did not think it was abnormal.
    Adam took longer than usual to pass his meconium, and to get back to his birth weight. I went to a Lactation Consultant to see if I needed to hold him differently.
    When Adam was one month old we saw our permanent pediatrician, on base, for the first time. I told him about my pregnancy, I told him about the ultrasounds, he listened to Adam’s heart. He said his heart sounded fine, but he was breathing a little fast. Had I noticed he was breathing a little too fast?
    Newborns are weird breathers. Sometimes they breath a little fast, a little slow, a little shallow, with a little sigh.
    I started to feel nervous. I had thought we were in the clear. Those two doctors at the hospital sent us home (why hadn’t I insisted they LOOK at his heart!) We had seen two civilian pediatricians before we got into DEERS and could be seen on base. Why hadn’t they noticed my precious baby was breathing too fast?
    We were moving from Kansas to Virginia in two weeks, our base pediatrician wanted me (David was already moved) to a pediatric cardiologist before we moved.
    The cardiologist said Adam had two holes, one moderate and one severe. He gave me a handout with an illustration. He gave me a hand out with warning signs to watch for. I did not understand what those signs warned of. He said to follow up with a cardiologist after our move.
    November 12, 2011 I got on an airplane with my four kids and our cat and flew from Kansas to Virginia.
    We found a cardiologist. She sat on the table next to Adam and ran the ultrasound wand over him herself, and she said, “That’s a big hole.” The reason no one could hear the hole, there was no blood wooshing through a hole, it was that big. That’s a big hole.
    I have to stop for a minute and say, mothers have taken their babies home from being born not knowing they had a heart defect and those babies have died in their arms, at home, in the hospital. This is why we have congenital heart defect awareness week, so people can learn about heart defects, learn to watch for those warning signs I got a hand out about. They are the warning signs of congestive heart failure.
    Breathing that causes the ribs to stick out, blue lips or finger or toe nails, sweating while eating, rapid breathing, tired, hard to wake up. The signs I was watching for…
    Our cardiologist in Roanoke is amazing, she is one of my three favorite doctors in the entire world. She sent Adam home that day in November 2011 with diuretics. A few weeks later she gave him potassium. I had to give him those medicines with a tiny tiny syringe every day. He fought. Good boy, fighting and stubbornness is good. He wasn’t too tired to fight most of the time.
    I asked if I should give him formula, I, a staunch supporter of breastfeeding, his cardiologist said no, he was doing fine with the nursing.
    On December 23rd, 2011, Adam had an appointment, he was seeing his cardiologist every three weeks. That day, Adam had lost one ounce. Until that day my mind was saying two sentences over and over, “Please let me keep him.” and “Please, no heart surgery.”
    On December 23, 2011 she said, that’s it, he’s lost one ounce, he needs surgery. I thought, okay, in six months, in a year… She asked if we wanted Duke or UVA, I’d lived in North Carolina for three years so I said, Duke. She said okay, we’d set it up, two weeks.
    Two weeks.
    Two weeks.
    Two weeks…
    I’m afraid for a time I was not a very good mother to my other kids. I think I was a shell. Two weeks. Merry Christmas, your son is so not well that in two weeks we will cut his chest open. We will make him very very cold, we still stop his lungs, we will stop his heart, we will cut him open… Two weeks. Two weeks. Two weeks.
    So, I said to myself, lets go outside. I took him outside all the time, walking and walking and walking and walking. If there was a chance I was going to lose this boy he was not going out of this world without having been outside as much as possible.
    What’s scarier than open-heart surgery? Spinal surgery? Lung? Brain?
    Once I knew he had to have surgery to live I knew that was it. All my other hopes were gone, hope for no hole-gone, hope for the hole to close-gone, hope he wouldn’t need surgery-gone gone gone gone so very totally gone.
    Okay, well, if he needs surgery he needs surgery and there is nothing I can do about it.
    I did not read a single word about it. I looked at pictures of babies who had open-heart surgery so I would not get scared when I saw him.
    Then on December 28th I was at the store looking for a light bulb for a crayon-melting kit one of the kids got for Christmas and my phone rang, and it was Duke. Come down January 10th they said, pre-op January 11th they said, surgery January 12th they said…
    The hard part right before I handed him over was I could not nurse him past midnight. And of course next morning he didn’t go back as soon as they said. But once he went back all I could do was wait. I had met Dr. Jaquiss and I liked him, I knew Duke was a good hospital.
    Josephine came with David and me to wait. Just like when Adam was born, she came with us to the hospital that day too. Antonia took care of Caroline for us. The best three girls in the whole world.
    Adam had an allergic reaction to one of the medicines and stopped breathing, but other than that it was successful. He had three holes, one they sewed shut, one they patched with a bovine patch (moo) one they left alone.
    That’s Adam’s story. He is cool. We are damn lucky. So lucky. I do not know a stronger word for how lucky we are.
    So, share this story, it has a happy ending. Oh, and I think there were signs of CHD Adam exhibited that I did not recognize before I knew. He had puffy eyes, he never woke up to eat, his fists were always closed.

    1. Thank you so much for sharing your story. That’s great that it has a happy ending. And, thank you for sharing so that more parents can be educated on what to look for.

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