In Short: Debilitating Heartbreak.
Read on Medium
Read Time: 3 minutes
Comments
My husband and I took the long road to marriage. It took us 12 years to become a couple and 14 to get married. So it didn’t take long for us to start adding to our two-person family.
We were like most expectant parents. We went through the first milestones of pregnancy with the normal mix of emotions — joy and the first ultrasound, anticipation about the labor, nervous energy about being good parents.
Then at the 20 week ultrasound, everything changed. The doctor took us to a private room and explained our son had a heart defect called Hypoplastic Right Heart (HRH). Essentially the right side of his heart did not develop properly. I responded to the news by bursting into tears. It was the beginning of the darkest time in my life.
The next 19 or so weeks of pregnancy are a blur of extra tests, ultrasounds and appointments with so many doctors. We learned to deal with the stress of knowing we were having a critically sick child. I researched every facet of my son’s condition and absorbed everything I could about what would happen at birth and beyond.
It turns out he was safe as possible while I was pregnant because I was giving him oxygen to his blood. However, upon birth, those bypasses would quickly close and he would need to be supported via other means.
Doctors decided to induce me so they could control the environment. When he was born, he was taken immediately to the Pediatric ICU. I couldn’t even hold him while he was being poked and prodded with tubes and needles. I was glued next to him as soon as they let me, and I made myself sick staying with him. The nurses even started bringing me food and water because I wouldn’t leave his side for days.
But life doesn’t stop and I had to return to some semblance of normal. I was feeling stronger and more resolved by the time the other shoe dropped. Testing revealed the devastating news that the left side of his heart was damaged too.
That was the beginning of the end. He was placed at the top of the heart transplant list, but, in the end, his heart was too weak and he passed away at 24 days old.
Losing my child changed the very fabric of my life. Part of me lives away in some place I can’t access. It is a perpetual loss. It hurts every day. But the intensity ebbs and flows. It’s PTSD — certain triggers will make it feel like I’m back in the ICU.
At the same time, my beautiful son made my life better. Going through the devastation of his death caused me to deal with my mental health (which I ignored). The world also seems less difficult. His death made me realize that I am stronger than I ever thought. I have been able to thrive through the struggles I’ve experienced since. I know that it is his spirit watching over me.
In the years since, I’ve been able to find some comfort in knowing his short life brought good into mine.
—
Brandi Olden is loving military spouse, mother and computer geek.
To Tell Your Own WiLt story, see the Submission Guidelines.
My heart goes out to you. We lost our daughter who was born on Christmas morning 1980 with ostigenisis imperfecta (brittle bone) — every bone in her body had been broken multiple times before she was born. She survived though for almost 5 years. She died the thanksgiving before her 5th birthday with heart failure. I still visit her to this day. And yes you realize you have strength you never knew you had.
I grieve for you.
When our son was 4 months old, he had the RSV virus. His chest was retracting about an inch — severe for a child that age. I had to lay my chest over him to hold him steady so they could start an IV. One of the hardest things I have ever done.
But I cannot imagine what you went through. I can also see the fear of trying for another child. I will remember your story and your child.
I feel for you so much <3 Our son Jean-Luc was also diagnosed with a heart malformation and pulmonary artery that did not extend to his lungs. There was no chance of it being operable, and such a rare presentation that nobody knew what would happen when he was born. After a 52-hour labour, the most gorgeous baby emerged. We were able to go home and spend time together until he died at 17 days old. Still, 23 years later, there’s a part of me that is not OK. I feel few people understand this experience, and it’s brave and generous of you to share your grief so that I know I’m not alone.
I remember. God bless you.
Loss is part of parenting, even when it comes at the beginning as it did for the author, some of the commenters, and me ~ the child is woven into my heart for life. Thank you for your courage in sharing as that strengthens us all as well as you, Brendi.
Parents can’t describe the loss of a child. Nor can anyone know the feeling. Been 55 years and I cried today.
—
There are, unfortunately, many who know the feeling. You are not alone. -rc