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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, August 19, 2013

Having HOPE in a Trisomy 18 (or 13) pregnancy

"For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope." - Jeremiah 29:11

I occasionally get e-mails from frightened women who are pregnant and have learned they are carrying a Trisomy 18 or 13 baby.  In their online researching they have come across Lilly's blog.  Their reaction is always amazement - they can not believe Lilly lived 17 months with full Trisomy 18!  That knowledge goes against everything their doctor(s) have told them.  They thank me for sharing Lilly's story and giving them HOPE. 

"The LORD is my portion,” says my soul, “therefore I will hope in him.” - Lamentations 3:24

Most of these women share that their doctors, or even spouses or someone significant in their lives, are telling them they need to abort their Trisomy baby because if for some reason the baby does live, it will be in constant horrible pain, or will be more work than the parents can handle, or it will destroy the family, or its life will make things unfair for its siblings, etc. 


Hunter & I the month before Lilly was born
Believe me, I understand that the statistics given for the survival of a baby with Trisomy 18 or 13 are low.  And, sadly, they are relatively accurate. Still, I think it is unfair of doctors to ONLY give the negative side of Trisomy 18/13.  (I remain thankful for the positive support my midwife gave me.  Her approach was be prepared for either alternative and "wait and see" and PRAY!)  Because of the internet, other Trisomy blogs, and Facebook groups like "Trisomy 18 Mommies", I know there are quit a number of children with Trisomy 18 and 13 that have lived for years and are doing quite well.

"Know that wisdom is such to your soul; if you find it, there will be a future, and your hope will not be cut off." - Proverbs 24:14


Recently I was reading through the latest catalog from the Bulk Herb Store.  In the section on herbs, they are listed alphabetically and a summary given for uses for each.  (Makes a fascinating and informative read!)  When I got to Echinacea, I read something I did not know about it:  "it increases the amount of T-cells and macrophages in the bloodstream."  I suddenly felt so disappointed in myself after reading this.  I immediately remembered when we learned that Lilly had no thymus and that meant her body was not producing immune fighting T-cells well.  (Information on that here.)  I remarked to Frank that had I known that about Echinacea when Lilly was alive, I probably would have kept her on it year round, instead of just giving it to her (tincture form) when she or someone in the house was sick. 

Before I knew it my mind was rapidly replaying Lilly's life and I was thinking of all the areas where I "could have should have" done better.  Frank reminded me that God had Lilly's days numbered from the start, and that I did the best I could.  I know I know ... but still ...

"Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." - Psalm 139:16

If I could go back and "do it all again" I would start with my pregnancy with Lilly.  Instead of alternating between fear and denial of the knowledge she probably had Trisomy 18, I wish I had added knowledge to that.  Grim statistics aside - I wish I would have researched.  Really researched hard online.  Instead I only tried it a few times, only found the "bad stuff", and gave up in the middle of sobbing.  If only I had pressed on and learned the "good stuff."  Because for some reason, that wasn't so hard to find after our precious Lilly was born, looking bright eyed and so cute.

Lilly dressed and ready to leave the hospital, only hours after her birth
I did know about the book Care of the Infant and Child with Trisomy 18 or Trisomy 13 but in my mind I thought "IF this baby survives birth - THEN I will get the book and read it."  Why in the world did I not want to know this valuable information in advance?  Ugh!  I could have been so much more knowledgeable and aggressive in getting Lilly the help she needed earlier.  Plus I would have been so encouraged to see the pictures of and read about some of the amazing children in that book.

I know it is really pointless to second guess myself.  (And not good - it makes me depressed.)  But I am sharing this to help anyone else reading this who is in the position I was in in 2010.  Don't listen to the negatives in the medical community and resign yourself to "well my baby will just die in the womb so what's the point."  No.  Have HOPE that your baby will live.  Pray to God for your baby's life.  And then educate yourself so that you will be able to do the best job possible out there in caring for and loving your precious Trisomy 18 or 13 (or any other Trisomy!) gift!  No it won't be easy but your life will be more blessed than you know is possible.

Lilly - 16 months

God may call your baby home before it is born.  But still, you will have done all you could and you will be so much more educated about what Trisomy 18 or 13 is and that will make you feel closer to your baby - just understanding it better.  

The world needs more of us who understand about Trisomy and can help spread more understanding about it - especially among the medical community.  When we had our ultrasound with Solomon, we were thrilled to have the same doctor come in to talk to us that had been there during Lilly's ultrasounds.  He asked about Lilly and was amazed with what we told him!  (See my post about that here.)  
I've mentioned frequently how thankful I am for the Trisomy support organization SOFT.  Another really good organization is Hope for Trisomy 13 & 18.  I love the very name:  HOPE.  (Check out Lilly's story in the Inspirational Stories section!)  The Trisomy community desperately needs groups like these to help get the word out there.  (Along with us noisy mama's who keep bringing it up!)

Home

Receiving the news that your baby may have Trisomy does not have to be a death sentence!  Yes it's scary and yes it is full of unknowns.  But have HOPE.

“Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.” - Romans 5:5

Happy, smiling Lilly!  Full of HOPE!
"Be strong and take heart, all you who hope in the LORD.” - Psalm 31:24

4 comments:

  1. Such a wonderful encouragement to other mommies!

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  2. You are an inspiration and a beautiful source of hope to all soon to be mothers, whether they have a T13/18 baby or not. If you had done it all "right" (with the hindsight you have now), you would not have all these very important tips for other tearful and scared moms.
    What if? What if you did not have this knowledge NOW to share? Evidently, this is part of Lilly's story, for you to share your new found knowledge.
    xxoo

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    Replies
    1. Thank you for your encouragement Nikki!

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