Wednesday, September 23, 2015

One in a Million


Yesterday we learned that Ethan Daniel had Full Trisomy 9.

This condition is extremely rare. I've found very little on this condition in all of my research. In fact, one website I found on the topic of Mosaic Trisomy 9 and Partial Trisomy 9 even said, "Full Trisomy 9 does not exist." Well let me tell you, I have an official report from Ethan's doctor stating that our son had an extra copy of the 9th chromosome in every single cell of his body.


Diagnosis: FULL TRISOMY 9


Not Trisomy 9p, not mosaic trisomy 9. Full. 


As we met with the specialist to discuss Ethan's test results, I was struck by two major realizations: One: Every life on this earth has a purpose. Period. Two: God hand-selected Ethan Daniel with a plan.


First a little overview of what we learned:

(I'm no scientist, so please bear with my plain-Jane explanations.)

1. Full Trisomy 9 is always fatal.

2. Babies will Full Trisomy 9 are almost always miscarried in the first trimester.
3. Trisomy 9 is so rare that the California Prenatal Screen Program and the Non-Invasive Prenatal Testing blood tests do not even screen for it.
4. The doctor who delivered Ethan had never seen a baby with Full Trisomy 9...before Ethan that is.
5. Ethan's condition was "randomly occurring" and was not genetically passed down.

As the specialist (who also seemed surprised that our son had Full Tri 9) began to explain the process of conception and the formation of the 23 chromosome pairs, Chris and I were both blown away by the complexity of life. If one tiny thing goes wrong, we die. Every single tiny cell must properly split, attach, form, etc. in order for a healthy human being to be produced. If you ask me, it seems as if there are more things that could go wrong than could go right. Yet somehow, hundreds of babies are born every day.


How in the world are any of us alive? It seems impossible, but here we are! Surely, there is a God strategically forming each tiny cell.


Every person on this earth is a miracle, hand-selected by God to live. It completely opened my eyes to the value of every single person around me. Do you realize what value your life has?


Psalm 139: 13-16

 For you formed my inward parts;
    you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.


The second thing that I realized is that Ethan was a one-in-a-million miracle. The rarity of Ethan's condition was confirmed over and over. Doctors seemed so surprised that Ethan, a baby with Full Trisomy 9, made it to the third trimester and was born live. The spontaneous nature of his condition, and the miracles along the way, prove to me that God had a purpose for this anomaly; We did not give this to him and there was nothing we could have done to cause this.

There are many more answered prayers, than unanswered ones. 

We were told, "This was a baby that probably should've been miscarried"..but he didn't. 


"These babies aren't born alive"...but he was.  


We begged and pleaded with God for a child, and he answered. 


We prayed from day one that God would use Ethan's life to bring people to know Jesus, and he answered. 


We prayed that God would protect Ethan in the womb, and he answered. 


We prayed that God would give me a smooth delivery, and he did. We prayed that God would give us the opportunity to meet our son, and he did. Not only that, but he gave us 93 minutes with him. 

With a one-in-a-million baby that "should have" naturally miscarried. 

We prayed that God would allow Ethan to come home with us, and he said no. One "no" in a sea of yeses. One "no", that provided Ethan with much more than we could have ever offered him. Ethan will not come to us, but we will one day go to him. 

God knit Ethan perfectly together for a purpose. His eyes saw him; every one of those 93 minutes were written in his book. 

I miss you, my little fighter. I've said it once and I'll say it again. I'd do it all over for you. Even if I knew the outcome. I'd do it again and again and again. 

4 comments:

  1. "The eternal God is your refuge, and underneath are the everlasting arms." Deuteronomy 33:27 Amen and Amen!

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  2. I'm not sure why this posted "unknown" but know we continue to lift you up. Thank you for sharing.

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  3. Thank you. This was beautiful as I know Ethan is and forever will be!

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  4. Thank you Kristin as always for sharing you experiences, and you enormous faith. You are an inspiration to me, to strive for a more peaceful/faithful exsistance. <3

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