Ashers Story | Congenital Heart Defect Awareness Week

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Asher’s Heart Story

 

February 7th through the 14th is known as Congenital Heart Defect Awareness Week. Congenital heart defects (CHD) are America’s most common birth defect affecting over 40,000 babies each year.

This is the story of my son, Asher Jude, and his special heart.

My son, Asher, was born on September 28th, 2014. For two whole days, we were like any other brand new family. We had the flow of nurses, family and friends coming to meet our new little life, our hearts were full, and we had no idea what was just around the corner. On the advice of some wise mothers before me, we gave our son to the nurse in the middle of the night so we could get some solid sleep knowing that the next night we’d be home with our son without the help of the hospital staff. 

While he was in the nursery, the nurse administered his discharge screenings. The nurse used the pulse oximetry newborn screening and saved my son’s life that night. After a whirlwind morning of testing and lots of uncertainty, I’ll never forget the arrival of our sweet pediatrician with his tears streaming down his face saying 3 things I’ll never forget: U of M, Heart Surgery, Friday.

Asher was born with Transposition of the Great Arteries (TGA) which is something called a Critical CHD this means he had to have open-heart surgery to survive. He had surgery at five days old and we are so grateful his surgery was successful and he was able to go home just eight days after his surgery. I was absolutely determined to be as strong and positive as I could all through the hospital stay. Asher was going to be fine. I was fine. It was all going to be fine. I truly believed that there was no way I was going to have any sort of postpartum depression or anxiety. I was appalled when the nurse on the phone at my OB’s office offered to call me in some meds since I was going through a “hard time”. How dare she?! I didn’t need medication. I was fine.

Those first few months home were just straight survival. Being a parent of a newborn is hard. Being a parent to a newborn recovering from open-heart surgery was especially challenging. Managing a million doctors’ appointments, medications, weigh-ins, and feeding schedules didn’t allow for time to really process all that we went through and the emotional weight it had placed on my soul. Looking back, this is where the signs and symptoms of PPD and PPA started to show through the cracks of my positive exterior.

As a mom, it is so deeply wired in us to care for our babies. When your baby is sick and needs to be cared for by a medical professional, it can leave you feeling helpless. It took me years to recognize the pain, the hurts, and the anxiety that was weighing on me from all that we went through before, during, and after surgery. I rarely left my son and when I did I felt guilty. Mom guilt will eat you alive if you allow it. The best thing that I did for myself was to start going to counseling. Oh, how I wish I would have started sooner! We began to unpack the years of hurts, coping mechanisms, and anxieties. I was able to do a specialized type of therapy called EMDR which is especially helpful in trauma reprocessing. It has changed my life! My only regret is not reaching out for help sooner.

Asher is now a healthy, happy 5-year-old little boy. Today, I am a mom of 2 and a survivor of postpartum anxiety and depression. I realized in recent years that Asher will not remember his heart surgery, his first few weeks of life, or even his cool ambulance rides. Asher will only know the story of his heart surgery by what I tell him and how I share that experience with him. We never call his heart broken, damaged, or messed up. We call it special.

Every single congenital heart defect, every single heart mom, every single experience is different. Each of them is special. If you or someone you know is expecting a child with a congenital heart defect, I want you to know that there is hope and there are resources out there to help and support you including a local Congenital Heart Network of Northwest Ohio. Reach out and don’t wait!

Guest Writer: Megan Sankiewicz

Megan Sankiewicz lives in Perrysburg with her husband, David, and two little ones, Asher (5) and Zara (2). She is a Pure Barre teacher and Personal Trainer for pregnant and postpartum women. Megan can be found frequenting our local coffee and juice shops usually with a toddler on her hip. She is also passionate about empowering women to believe in themselves and feel always enough. 

 

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