Living with a Baby Who is Going to Die at Birth

By
Managing Real Estate Broker with Keller Williams Allentown Broker License # AB066822
http://actvra.in/4KKf

My first real parenting decision was made on June 26, 2015.  It was simple, but not easy, particularly since it was a life or death decision.  My newlywed wife Amira was 12 weeks into her pregnancy with our first child.  We were told that day by our doctor that our unborn child had a condition which was “not compatible with life.”  Our baby did not develop a top of the skull.  There would be nothing to contain and protect the cognitive part of the brain, and therefore the brain could not develop.   Anencephaly, the doctor called it.  A terminal prenatal diagnosis.  A birth defect.  A death sentence. 

And a choice.  Amira and I decided we would carry our baby to term, instead of terminating.  We would give our baby a chance to be born, even if death would happen the same day.  Our baby had a heartbeat and was moving around in Amira’s womb.  Being Christian, and pro-life, made the choice to carry to term simple.  But our choice is not easy.

The Paradox of Modern Medicine

The paradox of modern medicine allows us to know more about our baby, yet because we know so much we can now see death coming in the distance.  Up until about 20 years ago, doctors and parents did not know a baby in the womb had a terminal condition until the birth.  Today, the capacity to diagnose problems like anencephaly gives parents heart-wrenching choices.  They can elect to medically terminate the baby’s life or let the pregnancy play out.  Evidence shows that the majority of parents terminate the pregnancy when they are told that their baby has a condition like acrania, anencephaly, or Trisomy 18 (Edwards Syndrome).  In fact, some medical professionals are befuddled as to why parents would continue the pregnancy.

Challenges, Contradictions, and Moments of Inspiration

Our summer of 2015 has been spent dealing with a variety of challenges, apparent contradictions, and moments of inspiration.

- Some people tell us matter-of-factly that we are foolish to carry our baby to term.  Abort, and move on, they say.  They are mystified why we would continue with this pregnancy.  In one sense, they’re right in that carrying to term does prolong the emotional attachment to our baby and therefore the grief.  Yet how could we stop our baby’s heartbeat and deny ourselves the chance to hold our baby in our arms, but for a few minutes?

- Some people tell us to pray only for a miracle, even in the face of clear evidence that anencephalic babies do not survive.  We have been taught as kids to pray for miracles and that God answers prayers.  Yet the contradiction is that we feel like we’re deluding ourselves in praying for a miracle, as that would be akin to praying for a person with no arm to magically grow one.  Amira and I switched from praying for a miraculous skull formation to praying for our baby to have comfort now, along with a warm welcome into the arms of Jesus Christ soon.

- Some people we have just met congratulate us on Amira’s obvious pregnancy, yet we don’t have the heart to tell them that we know our baby will die.  Everyone is happy to see someone pregnant, and we choose sometimes to not tell people about the anencephaly diagnosis.  Why should we make them feel awkward and sad, when they are giving us joy?  And why not share their joy at seeing Amira pregnant?  Aren’t emotions really a choice, and why not choose to be joyous?

- Sometimes we have become angry with God because of our innocent child’s deadly diagnosis, yet sometimes we feel so much closer to Him because of this challenge.  It is something new for us to be angry with the Lord for what is happening, yet we feel closer to God when in the presence of such an outpouring of love from family and friends.  When we receive kind words and notes from people we know well and barely know, we find that many of them see us as an inspiration.

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

Our Unborn Baby’s Name

Our next great parenting decision was to name our baby.  We chose to name him Creed Daniel DeSa.  Creed means a system of Christian belief or faith.  In Hebrew, Daniel means, “God is my judge.”  We chose these names because we pray for little Creed to pass quickly from the corporal bonds of earthly life into the loving arms of his Creator.  While we lament his pending death, in the same moment we think how lucky Creed is to have the opportunity to be welcomed into the arms of Jesus so quickly.

Seizing Parenthood Before His Birth

And since our time with our child is so limited, we have taken on the role of parents before Creed is born.  His due date is January 8, 2016.  His birth date will likely be his death date too.  So we have taken Creed to the beach.  We have sung to him and prayed next to him even as he lays in the womb.  Amira took him to a Broadway show and a Motley Crue concert.  We have taken him to church and to the movies.  We have taken him to my mother and Amira’s parents.  We listen to his heartbeat, and Amira feels his kicks.  We will take him to an NFL game, albeit in Amira's womb.  We even bought him a Buffalo Bills baby shirt so he can support my favorite team with me.

I get to be a daddy and Amira gets to be a mommy, if but for a fleeting moment.

We look forward to the instant when we can hold Creed in our arms, knowing that we’ll be lucky to have just a few minutes before his body shuts down.  We’ll get his footprints and handprints, take some photos and hopefully record a few sounds he makes.  We will love Creed and honor him.  We will hold a funeral.  And we will pray.  Pray for him.  For other parents who have a baby with anencephaly.  For Creed to have a little brother or sister one day.  For us to see him in Heaven when the Lord permits us.

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.

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Re-Blogged 2 times:

Re-Blogged By Re-Blogged At
  1. Sybil Campbell 10/22/2015 02:59 AM
  2. Robert Vegas Bob Swetz 10/24/2015 05:57 AM
Topic:
Just for Fun
Tags:
anencephaly
acrania
creed daniel desa

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Rainer
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Dan Nguyen
Keller Williams Realty Phoenix - Tempe, AZ
Sales & Marketing of Residential Real Estate in AZ

Tai DeSa First, you're an incredible husband, father and person. I couldn't imagine going through what you have in the past few months, trying times some of us will never face in a lifetime. I wish I was back in Bath, PA, to meet you. Truly. No matter what, we can't be prepared for this. Creed, such a blessing. I believe everything happens for a reason and though we are blind to it now, it shall pass and be revealed. Nothing anyone can say will do justice, but praying is powerful Tai. Bravery and courage are only two of many words that describe you and your wife. 

Sep 27, 2015 01:35 PM #63
Rainmaker
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Ryan Huggins - Thousand Oaks, CA
www.HugginsHomes.com - Thousand Oaks, CA
Residential Real Estate and Investment Properties

I am at a loss for words.  I am so sorry for what will happen, but yet happy that you are able to share so many great experiences with him while he is still in the womb.  They say that the unborn child can actually hear and process while in the womb.  Creed will stay with you and be alive in your hearts and be able to share in your lifetime of experiences that way too.

Sep 27, 2015 03:31 PM #64
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Christine Donovan
Donovan Blatt Realty - Costa Mesa, CA
Broker/Attorney 714-319-9751 DRE01267479 - Costa M

Tai DeSa - Heart-broken and amazed  by your story, your faith, your love and what you are doing for Creed.  

Sep 27, 2015 03:38 PM #65
Rainmaker
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Warren Schutt
Warren Schutt Real Estate - Danbury, CT
Helping People with Their Moves for over 36 Years

Tai and Amira,

Thank you for sharing. Hearing of your pain and courage caused me to remind myself of my blessings. Life, even with its uncertainties, is a blessed experience. Wishing you continued strength, support and peace as you travel your difficult journey.

Sep 27, 2015 11:57 PM #66
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Keji Ogunleye
Fairfax Realty, Inc - Greenbelt, MD
GRI, SFR, KejiYour Realtor

Thanks for sharing. God of peace will grant both of you peace and comfort you on both sides... 

Sep 28, 2015 09:38 AM #68
Anonymous
Christina Green

A baby in Florida is celebrating his 1st birthday after similar findings. I pray that all goes better than doctor predicted. Blessings to you, your wife, and loved ones.

Sep 29, 2015 10:54 AM #69
Anonymous
Hope

http://wtkr.com/2015/09/29/baby-born-with-part-of-skull-missing-defies-the-odds-celebrates-first-birthday/

Sep 29, 2015 11:00 AM #70
Rainmaker
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Sybil Campbell
Long and Foster REALTORS® 5234 Monticello Ave Williamsburg, Virginia - Williamsburg, VA
REALTOR® ABR, SFR, SRES Williamsburg, Virginia

Hi Tai DeSa, I haven't seen a blog from you lately so I wanted to check in with you and see how you and the family are doing.  I have been praying for you and your family and have asked several others to do so as well.

Oct 22, 2015 02:57 AM #71
Rainmaker
918,500
Susan Haughton
Long and Foster REALTORS (703) 470-4545 - Alexandria, VA
Susan & Mindy Team...Honesty. Integrity. Results.

I read your story through Sybil Campbell 's reblog and wanted to just reach out to you by sending prayers of strength and comfort for your family.  You and your wife are a wonderful testament of faith and you have touched many with your decision.  May God continue to bless and keep you safe.  

Oct 22, 2015 04:27 AM #72
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Robert Vegas Bob Swetz
Realty ONE Group - Las Vegas, NV
Las Vegas Henderson Homes for Sale

Hello Tai ... I was brought to your post by a reblog by Sybil, other wise I would of missed this heartfelt post.

The courage that it must have taken for you to post this is incredible and thanks for the read.

And would you mind if I posted your blog within the world wide web?

And by the way, congrats on the GOLD STAR ... well deserved 

Oct 24, 2015 05:25 AM #73
Ambassador
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Robert Vegas Bob Swetz
Realty ONE Group - Las Vegas, NV
Las Vegas Henderson Homes for Sale

Hello again Tai ... I have reblogged your post and have featured your post about "Creed" to 4 of my groups at the Activerain network.

I hope you don't mind???

 

LATE NIGHT - EARLY MORNING AT ACTIVERAIN

 

FRIENDS AT ACTIVERAIN

 

Activerain and Member (Plugs)

 

EXPRESS WITH PHOTOGRAPHS AT ACTIVERAIN

Oct 24, 2015 06:07 AM #74
Rainmaker
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Les & Sarah Oswald
Eastvale Team Realty & Property Mgmt - Eastvale, CA
Broker, Realtor and Investor

Tai and Amira - Your strength and faith are a testament of your love to our God. I will pray you continue to pour all your cares and worries on Him. Let Him lead you and guide you during this difficult time. Allow His Grace to be all sufficient to you both. 

 

Oct 24, 2015 07:12 AM #75
Rainmaker
527,800
Gary Coles (International Referrals)
Venture Realty International - Las Vegas, NV
Latin America Real Estate

Tai DeSa I will be adding my prayers to the others from friends here in the Rain.

Oct 24, 2015 07:48 AM #76
Rainmaker
366,520
Pat Starnes, Brandon, MS
Front Gate Real Estate - Brandon, MS
Broker Associate, ABR, 601-278-4513

Tai & Amira, please know that many people are praying for you, your sweet Creed Daniel, and praying for strength, wisdom, love, faith and God's blessings.

Oct 26, 2015 11:04 AM #77
Rainmaker
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Inna Ivchenko
Barcode Properties - Encino, CA
Realtor® • Green • GRI • HAFA • PSC Los Angeles CA

You are both very brave. I can not even imagine the pain of of your broken hearts. Blessings and prayers to your family. 

Nov 09, 2015 03:04 AM #78
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Karen Fiddler, Broker/Owner
Karen Parsons-Fiddler, Broker 949-510-2395 - Mission Viejo, CA
Orange County & Lake Arrowhead, CA (949)510-2395

I wish I had some words of comfort, but know that everyone who hears or reads of your story will be praying with you. I admire your strength to be able to carry to term. I doubt I could make that decision. Bless you and your wife, and sweet little boy. 

Nov 15, 2015 08:46 AM #79
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Chris Ann Cleland
Long and Foster REALTORS®, Gainesville, VA - Bristow, VA
Associate Broker, Northern VA

Your faith is so strong.  I am inspired reading of your choice, and courage to face the loss you know is coming.  You choose to look at the beauty of being a parent for a day, and that is so amazing.  My prayers are with you.

Nov 22, 2015 04:00 AM #80
Rainmaker
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Sam Shueh
(408) 425-1601 - San Jose, CA
mba, cdpe, reopro, pe

It is very sad some lives born without giving the chance to stay. 

You will be blessed. Wish you and family the best,

Sam Shueh

 

Nov 22, 2015 11:49 PM #81
Rainmaker
1,288,615
Yolanda Cordova-Gilbert
Sitterle Homes - Richmond, TX
Sitterle Homes

Sybil,

 Congrats on the feature a sad story for sure. I would not make the same choice and glad it is not mine to make!

Feb 01, 2016 08:55 AM #82
Rainer
2,625
Philip Kresge
Finance of America Mortgage - Alburtis, PA

Tai,

  My prayers with you.  It is so difficult to choose joy in the face of adversity and circumstance.  That is what we are called to do.  Your post is the most touching example of that I've ever seen.

Yahweh Shalom (The Lord is Peace)

-Phil

Jun 23, 2016 04:01 AM #83
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