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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