Losing a Loved One to a Rare Disease

My daughter died of ectopia cordis.

My husband and I learned about this birth defect around eighteen weeks into the pregnancy, and we also learned that it meant our daughter’s heart was growing outside her chest. Do you know how rare ectopia cordis is? An estimated 1 in 126,000 babies have this defect, and 90 percent of them die within the first few days after birth.

Ninety percent. That number wouldn’t exactly comfort a mother’s heart, especially in her first sustained pregnancy. Still, this stubborn mother donned her armor and sought to fight the terrible defect at any cost.

“Her heart seems to be structurally normal,” said the pediatric cardiologist.

With a little hope rising in our hearts, my husband and I agreed to several appointments, including a fetal MRI, at the renowned Children’s Hospital of Atlanta. We knew that our baby’s chances were slim, but we hoped anyway.

Then, the doctors entered the meeting room after the MRI, heads shaking. As we heard their somber diagnoses, we felt hope slip through our fingers like the beautiful white sand from our hometown beaches.

Our baby had little chance of living, even with the tremendous advancements of modern medicine. She simply had too many things wrong with her.

Cherishing Every Moment

Thankfully, our story didn’t end in that meeting room. Surrounded by our church, friends, and family, we learned the meaning of love and selfless giving from them.

We learned to live in the present, laughing and crying through the pain. We talked to our daughter and caressed her through my growing belly, and I actually look back at many of these moments fondly.

While I know that my daughter’s situation doesn’t happen to everyone, it does happen. Rare diseases and birth defects are real. Maybe you’re facing a similar situation, watching a loved one fade away from a rare disease. It’s not easy knowing that you could lose him at any moment. You feel helpless and alone, and you hate having to grieve for your loved one while he’s still living.

At the same time, you can do something important during these precious last moments. You can cherish them and record every minute too.

Take more pictures and videos of your time together than you’ve ever taken before. If your loved one is well enough, bake, scrapbook, camp, and vacation more than you’ve ever thought possible.

Thumb through all the memories you’ve made over the years and have song or movie nights where you play through the loved one’s favorites. Most importantly, talk with him both seriously and lightheartedly. Don’t let him rest on sad thoughts too often, but don’t shut out the important things he has to say either. In short, cherish every last drop of life that he has left.

Keeping the Memories

Thanks to a wise coworker’s advice, I journaled my experiences as they happened. I jotted down my daughter’s story, page after page, detailing my feelings and cherishing the memories. Eventually, I transferred these thoughts and feelings to my blog where I hope to help others through my experiences.

I can’t tell you how much these writings mean to me now. I can tuck my journal out of sight when I don’t want to see the sad story. Then, when I feel the need to relive that time or celebrate my daughter’s life, I pull it out again and grab a tissue box. No matter how you choose to cherish your time, purpose to create these lasting memories and find a way to keep them where you’ll need them the most.

In the Fearful Aftermath

Even though you may know about your loved one’s rare disease before he passes away, you will still go through the grieving process. In fact, you may also experience intense fear or anxiety following your loss too.

After my daughter died, I jumped at every sound if I stayed in the house alone. I would lie awake at night paralyzed with fear that something terrible would happen the next day. Surely, someone would break into the house, or my husband would get into a car accident.

After all, if my daughter could die of such a rare defect, anything could happen to us. Only a few months ago did I get a handle on these irrational fears, and I’ve had them for nearly a year now.

Overcoming Fear after your Loss

The key to overcoming these fears is to feel and face them. Ask yourself exactly how likely those situations are to happen. Write down the ones you think about the most and jot down a happy alternative that you could think about instead.

Then, purposefully put yourself in the situations you fear. For example, drive the car to the store across the street or stay at home alone for a few hours. Have someone check up on you throughout that time, if needed, to help you feel safe. Overall, take hold of life’s joys again and don’t let your fear drive you.

As a believer in Christ, I also relied heavily on my beliefs for healing and peace. I kept my thoughts on my faith and let that pull me through the grief and fear, knowing that my friends were praying for and supporting me. Rather than letting fear overwhelm me and keep me from a healing peace, I chose to trust in the people and faith that had always supported me before.

Yes, losing a loved one to a rare disease is painful and difficult, but it doesn’t have to spell the end of your happiness. Instead, cherish and keep close the memories you made together and learn to face the fear that comes afterward. By working through these deep lessons grief has to teach you, you’ll be paying your loved one the greatest honor — finding meaning in his death.