Mother’s Day – Sarah’s Story

We don’t always celebrate Mother’s Day with a tangible gift. Sometimes the day serves as a reminder of the blessings that Motherhood is on its own. Below, Sarah shares her story about what Motherhood had taught her.

There are so many valuable life lessons I have learned in my 8.5 years as a mother.  Not only have I learned more than I ever imagined, I believe the discoveries are unique to each mother.  For instance, I have realized and been touched by various

events that may not impact some mothers as they do for others.  This is what I believe to be a special component of motherhood.

Mother’s Day has become even more special to me since the birth of our 22-month old heart warrior.  While every day is a joy with both of my children, Mother’s Day is an extra reminder of how fortunate and blessed to have two children I learn so much from on a regular basis.  I truly take no day for granted.  While our journey is full of uncertainty raising a heart child, I treasure every moment.

If I had known what I may have experienced when becoming a parent prior to motherhood, I may not have ever become a mother!  My life as a mother has been very eventful; both full of joys and many hardships – some of which many mothers never experience.  However, some of these difficult times, such as the diagnosis and journey with our son’s complex heart condition have made me a better and stronger mother and person.  I have since realized more so now than ever, what is important in life – what is needed and what can be lived without.  Less is truly more.

Motherhood, has blessed me in more ways than I could ever describe and even more so since I became a heart mom.  While the times in our journey have not always been good; they have led to where I am today and I am proud to have two loving, caring, courageous, and energetic boys who remind me what life is all about.

Each year, I look forward to Mother’s Day and am thankful I am a mother of two remarkable boys who remind me of how lucky I am, especially our little miracle child and warrior.  Motherhood has helped me grow as a person and professional, for which I am so grateful.

 

The author, Sarah Diamond, has a passion for the non-profit sector, working with volunteers, writing, and educating.  She holds a Doctor of Education in Educational Leadership and works in non-profit management.

In 2016, she partnered with two colleagues to form a non-profit, where she serves as the President and CEO of the organization, which helps families experiencing medical conditions.

She and her husband have two sons and enjoy spending time together outside doing many activities like riding horses, running, fishing, and gardening.

 

 

Mother’s Day – A Grieving Mother

Most of us spend Mother’s Day with our children, but for Kristin Burns, who lost her son to CHD, the day means something different. Read her story below. 

I remember the day that I become a part of the CHD community. It was August 18th, 2016. Since that day, my life has been changed forever. I have learned so much, and I have grown exponentially as a person. My first and only son, Brycen Alvin Burns, was diagnosed with CHD at 20 weeks gestation. From that day forward, he fought for his life every single day. Watching Brycen fight for his life, taught me so much as a mom and as a person. He taught me how to be strong, and how to fight with all my heart and never give up. He taught me how to be an advocate for him, and how to always trust a mother’s intuition, as its almost always right. He also taught me how to love with every ounce of my being, with the knowledge that life and death hang in the balance, and that every day we got with him was a gift. After 229 days here on Earth, Brycen was taken from us. He passed away as a result of complications from his heart defects and other medical issues. On July 29, 2017 I became a childless Mother, and the Mother of a Heart Angel. Being a childless Mother is not how I thought I would be spending Mother’s Day this year.

 

My first Mother’s Day was spent in the ICU at Children’s Hospital and Medical Center in Omaha. Brycen was recovering from 1 open-heart surgery, and 3 additional open chest surgeries, including a very risky tracheal reconstruction. Amid the humming of medication pumps, and the beeping monitors, we still celebrated the holiday. Brycen was battling withdrawals, but I was just so thankful that he was still here with us, that I didn’t care about the struggles. I remember trying to make the staple “First Mother’s Day” crafts with Brycen and my husband Jeremy. I remember laughing at how imperfectly perfect they were, and I remember thinking that there was always next year to make better ones. Little did I know what the future was going to have in store.

 

This year, everything is different. I no longer have the tangible and physical evidence that shows I am a mom. I will always be Brycen’s Mom, but now that he is no longer with me, it is hard to hold onto that identity. In fact, sometimes I like to go back to the hospital, because that is the only place that I am still referred to as Brycen’s Mom. But most times, I don’t even feel like a Mom anymore, because I don’t get to do the things that mom’s get to do. I don’t get to change diapers. I don’t get to play with my child. I don’t get to tell him to stop climbing on everything. I don’t get to do anything that mom’s get to do. Instead, I get to visit my son’s grave. I get to talk to him and call out to him in my prayers. And I get to tell people his story about how hard he fought from the day he was conceived, up until the day he passed away. These are the things that I get to do as a childless Mother on Mother’s Day.

 

Once you lose a child, the holidays are tough. Mother’s Day will be another “first holiday” without Brycen, and I can only imagine how difficult it will be. Social Media will be flooded with family pictures, pictures of beautiful flowers and of handmade gifts from children to their Mothers. And people will be posting about how great their Mother’s Day was. But then, there are loss moms like me. On Mother’s Day, we don’t get to wake up to any of that. Instead, everyday we wake up, we wake up to the same living nightmare that our child is gone, and we get to relive that moment, over and over again. And just like every other day after loss, we will wake up, put on our “faces” and put one foot in front of the other. This is our new world; because our “normal” died the day we lost our child. We have become experts at carrying our grief with us, each and every day. We have become experts at hiding our grief behind love and joy and even behind pain and sadness. We have had to become experts at this, because grief never goes away. Grief is forever, and lifelong, just like our love for our child. Grief is always there, but we just learn to push through it.

 

I personally have mixed emotions about Mother’s Day now. I find myself wondering if I should even be celebrated, as I no longer have my son with me physically. But then again, I am Brycen’s mom, and no one can ever take that away from me. I guess my wishes for Mother’s Day are simple, and they include all of the loss moms/bereaved moms in the world. Please don’t forget about us. Please don’t avoid us, and please don’t avoid saying our child’s name. They existed and will always be our children. But please don’t be offended if we distance ourselves for a little while to collect our emotions. Please be patient with us, and know that we are hurting. While we watch you play with and hug your children, our arms and our hearts are aching to hold our children just one more time. On Mother’s Day we will celebrate your joy with you, but we will be experiencing pain. A pain that is unimaginable. So please don’t forget about us.

 

To all of the mom’s that have lost a child, or multiple children, this is for you. This is to show you that you are not alone on Mother’s day, or any other day. We are all in this together. We are all members of this club that we never asked to be in. Just know that it’s okay, to not be okay. It’s okay to distance yourself, and to take time for you. Your loved ones will understand. Grieving mothers are some of the strongest women in the world, and so we celebrate you on Mother’s Day, and every other day! From one loss mom to another, I see you and I understand. Happy Mother’s Day!

 

 

 

Kristin Burns is a 30 year old Heart Angel Mom, from Council Bluffs, IA. She is a Physical Therapist Assistant and has been married to her husband Jeremy for 3 years. Their son Brycen was diagnosed in utero with several medical issues including Congenital Heart Defects. Due to Brycen missing his left lung, seeing his entire heart anatomy was difficult due to positioning, and they were given several different diagnoses. After his first open-heart surgery his full diagnosis was VSD, ASD, Overriding Aorta, Hypertrophic Right Ventricle, Double Aortic Arch and a Vascular Ring. Since becoming a part of the CHD community back in August of 2016, at Brycen’s first diagnosis, Kristin and her husband Jeremy have been strong advocates for CHD research and raising CHD awareness. With the help of another Heart Angel Mom, Kristin is helping start a non-profit organization to help other CHD families at the local Children’s Hospital and Medical Center in Omaha. They are also helping start support groups for inpatient families and also for bereaved families.

Beyond the Heart – Pediatric Pulmonary Complications

In a follow up to PCHA’s series on complications resulting from CHD, Dr. Nidhy Varghese, of Texas Children’s, adds insight to the pulmonary implications in patients affected by Congenital Heart Disease. 

 

Pediatric Pulmonary Complications of Congenital Heart Disease
Dr. Nidhy Varghese, pediatric pulmonologist at Texas Children’s

Congenital heart disease is the most common birth defect in the world, affecting the hearts of thousands of children each year. However, congenital heart disease (CHD) affects more than just the heart. Abnormal cardiac development can have significant effects on other organ systems such as the lungs. The lungs are directly connected to the heart and they share a unique relationship of development and physiology. Effects of CHD can be seen in lung growth, in anatomy and in lung function. Although these can be considered as prenatal and postnatal consequences, the pulmonary complications of congenital heart disease represent a spectrum of consequences.

What is the function of the lungs?

The lungs are the gas exchanger for the body. A multilevel organization of airways present oxygen and remove carbon dioxide through contact with a rich network of blood vessels in the lungs. The lungs are connected to the heart through the pulmonary artery and the pulmonary veins. They’re located in the chest, on the sides of heart.

Prenatal Effects

The lungs are made up of conducting airways, air sacs (known as alveoli) and blood vessels.  These structures begin to form by the end of the first month of embryonic development.  The development of the vascular system within the lungs and the branching of alveoli are directly related to circulation.  Abnormalities in blood flow due to CHD can cause alterations in development of the lungs’ vascular system (arteries, capillaries and veins) and the division of the airspaces into the millions of alveoli needed for adequate gas exchange. This results in simplification of the alveolar and vascular networks, which can produce symptoms of chronic lung disease and pulmonary hypertension.

Postnatal Effects

In the setting of CHD, the flow of blood within the heart and through the blood vessels is abnormal.  Different parts of the heart or the blood vessels themselves may become enlarged or may be atypically located within the chest, causing compression on the nearby lungs and airways. CHD examples in which this can be seen are anomalous innominate artery and conditions causing cardiomegaly (an enlarged heart). Compression can cause respiratory distress, stridor, wheezing and recurrent areas of lung collapse.

In certain types of CHD, there may be increased blood flow to/through the lungs (for example, patent ductus arteriosus, ventricular septal defect).  The arterial system in the lungs is not used to receiving such large amounts of blood flow.  Subsequently, the pulmonary blood vessels can become scarred and narrowed. While this effectively reduces the flow through the lungs, the pressure in the lungs can increase: a condition known as pulmonary hypertension.

Pulmonary edema is another complication of CHD. This is a condition in which high blood pressure occurs in the vessels close to the alveoli. As the pressure rises, water diffuses from the blood into the airspaces. The effect on gas exchange can be variable. Pulmonary edema is more likely in conditions such as pulmonary vein stenosis and mitral valve abnormalities.

In summary, CHD can cause many abnormalities in the lungs.  The respiratory system in children with CHD is more likely to be simplified which may affect gas exchange.  Certain types of CHD can cause further symptoms such as airway compression, pulmonary hypertension and pulmonary edema.  Pulmonary complications in children with CHD are part of a spectrum and can vary significantly in each child. It is therefore important that children with CHD undergo respiratory assessment for early detection of these consequences.

 

As a pediatric pulmonologist, Dr. Nidhy P. Varghese’s specific area of interest is pulmonary hypertension and pulmonary complications of sickle cell disease. She enjoys working closely with families and colleagues to deliver the best care possible to care for children, so that they may thrive. She earned her medical degree from Albany Medical College, completed her pediatrics residency at New York University School of Medicine and her pediatric pulmonary fellowship at Baylor College of Medicine.

Mother’s Day – A Mother’s Day Gift

Mother’s Day is a day to shower the women that have loved us  and cared for us with gifts in appreciation!  We bring them flowers and homemade cards, in hopes of bringing a smile to their faces. But last Mother’s Day, Melissa  Zolk  received a very different kind of gift, one that changed her daughter, Maxine’s life.  

 

 

Mother’s Day – Those two words hold a meaning unlike any other, especially if you are a heart mama.  To a heart mama, they mean countless doctor’s appointments, medications, syringes, feeding tubes, therapies, hospital stays, and surgeries.  They mean finding strength in moments when you thought you had none left.  However, they also mean understanding differences and embracing the beauty that comes with those differences.  The beauty of zipper scar lining your child’s chest.  They mean understanding true joy because you have experienced true sorrow.  The sorrow that began the moment you heard, “There’s something wrong with your baby’s heart!”  Those words start a journey filled with the unknown.  And little did we know what our journey would be like with our heart warrior.  We received the devastating news at our 20 week ultrasound and from that point on, our journey took the path unexpected.  Though now as a more experienced heart mama, I know that the unexpected is to be expected.  Our daughter, Maxine, was born on October 1, 2015 with Transposition of the Great Arteries, Pulmonary Stenosis, and Ventricular Septal Defect.  She had three heart surgeries including one open heart surgery before she turned one year old.

 

For me, Mother’s Day has even more meaning now.  It still means medications, appointments, procedures, and worry, but it also means the GIFT OF LIFE.  Last year on Mother’s Day, we received the call that changed our world – after living in the hospital and being listed for 137 days on the heart transplant list, Maxine was getting her new heart!  Oh, how the emotions came flowing.  Flowing free and fast and yet again, unexpected.  I think the most unexpected feeling was the peace that I had.  Yes, I was nervous and scared and worried and excited, but a feeling of peace came over me and lingered for a while.  Sometimes, I wonder if maybe the reason I felt so at peace was because maybe the family who chose to give us this incredible gift in their time of incredible grief felt more at peace knowing that part of their child would live on within my child.  Mother’s Day means my child received the greatest blessing, a second chance at life.  It means that this year I get to celebrate at home with my husband and our three beautiful children.  And on this Mother’s Day and every day to come, I promise to remember the mama whose heart is breaking because she lost her child last Mother’s Day.  A day she will remember for a completely different reason than the reason I get to remember.

 

To my fellow heart mamas and all mamas, Happy Mother’s Day!  Whether you are celebrating with your child here on Earth or your angel up in Heaven, I want you to know that I promise not to forget you and the amazingness you are as a mother.  You were created to be the perfect mama for your baby and you are exactly what your baby needs.  My hope is that you can remember that when the days are long and difficult because life will take unexpected turns and we will be there to help our babies get through it!  Because, well, we are mamas and that is what we do!

 

 

 

 

 

Hi there!  I am Melissa.  Mama of three crazy, beautiful children, ages 3 and under and wife to the most amazing heart daddy on the planet.  Our middle child is our heart warrior, and she is an energetic little stinker!  Besides being a heart mama, I am a high school, special education teacher.  In my free time, I like to make phone calls to doctors, pharmacies, and insurance companies. Ha, just kidding!  Our heart warrior has been on quite the journey these last few years.  If you would like to follow her journey, you can find her at Maxine the Mighty Heart Warrior on Facebook.