Thursday, March 18, 2010

Trisomy 18 Awareness Day - March 18, 2010

Today is National Trisomy 18 Awareness Day - as many of you are aware my sweet Aiden Mathew was diagnosed at 18 weeks gestation with Trisomy 18.  He was our third son and it was devastating to learn this.  I still remember lying on that table during the ultrasound waiting to find out if it was a boy or girl, then Tina, our ultrasound tech, said like the other 2 it is very obvious it is a boy.  Immediately my mind went to the old tv sitcom - My Three Sons.  It's amazing how quickly you find out the gender and start planning everything and in the next instant Tina has a look on her face and says he isn't flexing his hands like he should.  She looked more and sent her report to my doctor and said I needed to talk with him more it was probably something that could be fixed with surgery, she was being optimistic.  That afternoon, we saw my doctor and he said he was concerned it could be something more and that the High Risk doctor who only comes to NE Louisiana once a week would be there tomorrow and he wanted to make an appointment with him.
At that appointment, they performed another ultrasound and determined it looked like Trisomy 18 and wanted to do an Amnio to find out for sure.
I had never ever thought I would be laying there or going through something like this but I was.  We received the preliminary results and then the final results, everything came back positive for Trisomy 18.  I held out hope that it would be Mosaic or Partial, because those babies had a higher rate of survival, but we would not know that until Aiden was born.
Over the next few months, life was strained, hopeful, faithful, and chaotic, I planned it like this was any other normal pregnancy with thoughts of what would I do with his room if I could not bring him home always lingering in my head.  I felt him move very little but we had a heart monitor at home so I could listen to his heartbeat every night, I loved that sweet swooshing sound. 
During the last few appointments it was determined that Aiden was not gaining weight and if he was to have any chance he needed to be born sooner than later.  My doctor was afraid I would not get to meet him and he knew how much I wanted that.  So on Nov. 6, they performed a C-section because he was breech and delivery would also put undue stress/strain on his little body.  My sweet little angel was finally allowed to come home for his final days on Dec. 2, and on Dec. 8, he went to home to Heaven.  I held him and watched him take his final breaths, it was a bitter sweet moment.
I, at least, got to meet, hold, and love my sweet Aiden, many get their wings before they are born.

Trisomy 18 does not discriminate and shows no compassion.  So please say a prayer for those families that you know and those you don't that have a child in their arms or in heaven.


For more information - Trisomy18.org or SOFT.


But I am like an olive tree flourishing in the house of God;
I trust in God's unfailing love for ever and ever.
Psalm 52:8

20 comments:

I'maNolaGirl said...

I find myself so humbled by your strength and positivity. I will be thinking about Baby Aiden and all of the other Trisomy 18 babies today.

Leiah said...

I have friends back in Beaumont who had a Trisomy baby. I had never heard about it before then but am amazed at how often I hear it now. Thank you for sharing your story and making others aware of it. When reading your post it reminded me of the headstone of a family member's little one who passed at the age of 3 months. It says "It was better to have held her for a little while than to never have known her at all." Prayers and blessings you to today.

Franchesca Cox said...

How precious that you got to bring him home even for those few days, I am so glad you have those memories. I am sorry that your world was turned upside down at your 18 week appointment, it brings so much back for me. I wish none of us knew what it was like to say goodbye to our babies. Thinking of you today and all of us babyloss mamas. XO

Maria said...

Heart breaking, and beautifully written. I am relatively new follower and was unaware of your story. Thank you for the reminder that we should cherish and be thankful for the time we have together with our loved ones. I am sorry for the loss of your little Aiden, and moved by your strength.

Amanda said...

I think you are already putting it to Satan by your professions of faith. So many people are destroyed by what you've been through, but you're showing that the power of our God is so much stronger than anything the Devil throws at us. You are an encouragement to so many. We will never forget Aiden!

Dyane said...

I happen to stumble upon your blog, hope you don't mind me posting. We are in similar position last year with our daughter. I'm sure Aiden is playing with our Adeline. Beautifully put, thank you for your strength and for writing.

http://thehigginfam.blogspot.com/search/label/Adeline

Carey said...

Wonderful words of encouragement Ash!
As u constantly remind me to pray not only for your sweet family but for all trisomy families, it reminded me of this verse

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. 1 Cor 1:3-4

Mommyto2 said...

I'm so sorry for your loss. You must be a very strong person. Thanks for following. Cannot wait to read more of your blog!

chubskulit said...

I am with you on how you feel, when I was on my first trim of my second pregnancy, my OB told me that my baby might have Trisomy 18 so she sent me to a specialist. The did a bunch of test to me and suggested that I should go for an amnio but I refused and just put my faith to HIM above. Its a great blessing that I did not do the amnio proceudre because my son was born normal.

Will be praying for your baby and your family.

Visiting and following from Follow Me Friday.

Please come by and follow me back when you get a chance. Have a wonderful weekend!

Jenny said...

I had never heard of Trisomy 18 until I read your post.

I admire your strength and courage in sharing this information in spite of your pain.

I will be praying for you to find the answers you need to find peace in your heart.

Kristin said...

My prayers are with you and all those that have had to say goodbye to their little ones. You are amazingly inspirational!

SoMo Mom said...

I am so incredibly sorry for your loss. Your strength is such an inspiration. I will be thinking & praying for you and your beautiful family.

Manhattan Mommy said...

I am so sorry to hear that - my prayers are with you. Hopefully they will find a way to cure Trisomy 18.

sweetjeanette said...

Oh I'm sitting here at the keyboard with tears streaming down my face - and what do I hear on your blog's music is Mercy Me singing.... how appropriate that it would be playing at that post!
Thank you for visiting my blog from Southern Mommas and deciding to follow. I'm thrilled you did and I'm following ya right back. Heaven is a place of reunions, and you will hold your little angel again.

jeanette from sweetjeanette.com

Fabulously Chaotic said...

You are so amazing with the way you express yourself through words! Aiden was given the BEST MOMMY EVER!!

cottage and vine said...

Your story is very touching and reminds me how precious life is. Thank you for teaching us about Trisomy. I will say a prayer.

Mike and McGee said...

I found you through Southern Mamas. I am so very sorry for the loss of your beautiful, sweet baby boy. I know you will always treasure those all to brief but precious moments with him.

Avery's Mommy said...

Oh wow. Your post brought back so many memories. My ultrasound tech was Tina, who was also optimistic, and I had to wait for the specialist that comes to NELA once a week. (although w/ avery it was not trisomoy 18)

I'm so sorry for your sweet little Aiden.

Sara said...

Your posts about Aiden always touch my heart. You are an inspiration with your faith&positivity about what y'all went through!

Susan at Charm of the Carolines said...

I am crying for a loss to a family I've never met, but am uplifted by your courage, strength and love for this precious, precious little soul.

I've never even heard of Trisomy, but you can bet I'll be praying for families touched by it.

Susan