Living with a Baby Who is Going to Die at Birth: Update 1

What you focus on, you feel.  If we focus on pain, injustice, hatred, prejudice, violence, depression, and greed, we’ll find that there is plenty in the world.  If we focus on love, hope, joy, peace, fulfillment, gratitude, and giving, there is plenty to see and feel and appreciate.  The evidence is all around us.

The outpouring of support and prayers from my first blog about Creed Daniel DeSa proves to me that there is a superabundance of love, hope, gratitude, and giving.  My wife Amira is seven months into the pregnancy with Creed, and the ultrasound images clearly show that the top of his head ends where his eyebrows should be.  The ultrasound does not show the presence of an upper part of the brain.  Creed’s heartbeat, reflexes, and other basic bodily processes are operated by the base of the brain just above the brain stem.  And wow, does he kick like a soccer player.  We expect him to be born in December 2015, and we believe he will likely die the same day.

Countless family, friends, and total strangers have contacted us to show how much they care.  We discovered that we are part of an endless community that we previously didn’t know was there.  We have had many people privately share their stories of losing young children.  Life goes on.  It is comforting to sense the strength of others.

Seizing Parenthood Before His Birth

On November 3rd, we attended our latest ultrasound.  Creed’s face looks a lot like mine.  He looks like me in my baby pictures.  What a joy it was to see our son.

Given that Creed’s time on earth is even more limited than the time that Amira and I have been blessed with, we have made it a must to engage in parent-child activities now.  We navigated our way through a maze of corn stalks; we attended a Billy Joel concert at Madison Square Garden; we carved pumpkins; we warmed ourselves in front of the fireplace; we spent time with Creed’s grandmothers; we listened to Creed’s heartbeat with a fetal Doppler device; we talked to him so he could hear our voices.  We’re taking him to an NFL game later this week. 

Our doctor told us that Creed feels no pain while he’s in the womb, and he’s able to hear us.  Our fleeting moments of being first-time parents are precious as we seek to maximize Creed’s earthly experiences.  I am thankful that modern technology has allowed Amira and me to know about Creed’s anencephaly so we can seize parenthood now.

Gratitude for What We Have

I am so grateful that we live in the United States, where we have abundant medical resources and the ability to communicate with loved ones at the push of a button.  I also think of millions of young parents in far distant regions of the world who lose their child simply because they’re living in poverty.

The World Health Organization (WHO) and the United Nations International Children’s Emergency Fund (UNICEF) report that about 22,000 children under the age of five die every day around the world.  Most die in desolate parts of the world, far from the attention of the media.  The WHO reports that 99 percent of the infant deaths occur in Africa and South Asia.  About 3 million of the 8.2 million deaths annually could be prevented with low-tech, low-cost care.

The number of babies who die is staggering.  On the one hand, it makes my experience seem small since there are millions of parents a year who deal with such a loss.  Yet, it also empowers me to go beyond gratitude to do something for others.

Asking Empowering Questions

Despite all the grim expectations about our baby, I have moved beyond asking disempowering questions.  In times of sorrow, challenge, or pain, an empowering question to ask is:  “What is the deeper meaning in all of this?”  I have been pondering over that question, and it leads to more.

Did God send Creed here to force Amira and me to grow?  Is there a message that we’re supposed to share with others?  Is Creed here to make us better and stronger so that others can see us and be better and stronger too?  Should we do more to help the WHO and UNICEF prevent infant deaths?  Is this a divine reminder that life is short, so that we redouble our efforts to do more with our lives?  Should I step back from the busyness of business much more often to take time to appreciate God and those around us?

Faith

What happens to about 22,000 young children a day can happen and will happen in the future.  We have to have faith that there’s a deeper meaning in all of it.  In my next blog update about Creed, I’ll explore more about faith.  Thank you for taking the time to read this.  Thank you for caring.

 

A dear friend of our family, Jessica Geren, created a website to help raise funds for us to defer the costs of carrying Creed to term. Please click here:  http://www.gofundme.com/babycreeddesal

---

 

About the Author:  Tai A. DeSa is the Team Leader of the Keller Williams Real Estate office in Allentown, Pennsylvania.  DeSa is a graduate of The Wharton School at the University of Pennsylvania.  Prior to entering the real estate business, he served as an officer in the U.S. Navy.  The purpose of Tai's life is to be a leader and writer, and to do insanely good things for himself and others.