caption - title

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

Tuesday, October 4, 2016

Calling all parents of children with Trisomy 18 or 13! Your input is wanted!

holding baby chicks is so sweet
UPDATE:  I heard again from the doctor regarding the questionnaire.  If you have not submitted your answers -  please HOLD OFF for right now.  I'll update again when it's time to send them in.  Thanks!

Yesterday morning we had a surprise outside.  One of our Black Austrolorp hens marched out of the woods with nine tiny fuzzy little chicks trailing behind her.  What?!  We weren't expecting that!

The hen, who I've since named "Mama Mia," puffed herself up extra big and fluffy as we neared her and her biddies.  She wanted us to know that she would do everything she could to protect those precious babies.

That same analogy is used in scripture, when God wants to show how He longs to protect us:  "how often I have longed to gather your children together, as a hen gathers her chicks under her wings ..."  Matthew 23:37

Mama Mia and her 9 baby chicks
Don't we feel the same way about our own children?  Even the ones that have not been born or died before birth?  Even the ones that we are told won't live?  The ones that are "special needs" and considered by many in society to be useless?  Maybe especially those children.  We mamas (and daddies) fight for those children.

And if you've had a child born with Trisomy 18 or 13, you know what a fight it is.  Just to get common healthcare for your baby can be hard!  We live in an area surrounded by highly recognized hospitals yet our Lilly could not get her heart surgery here.  We were told these surgeons believed it was "unethical" to put a child through that when they are just going to "die anyway."  (So fine - we took Lilly all the way to Florida for the surgery!)

Lilly at 16 months - our happy girl lived 17 months with full Trisomy 18
Last week I was contacted by a UNC Hospital task force (Chapel Hill, N.C.).  The man from the pediatrics unit that I talked to said they are attempting to improve their communication with families who face a diagnosis of T-13 or 18.  They recognize that these children “are staying alive longer and that the hospital needs to change their approach.”  For example - “to stop using hurtful language, whether the child is well or not.”  (Let’s wipe out the use of “incompatible with life!”)  In order to better counsel families, he e-mailed me the following questionnaire that he is hoping to receive feedback on, and asked me to share it. 

UPDATE:  I heard again from the doctor regarding the questionnaire.  If you have not submitted your answers -  please HOLD OFF for right now.  I'll update again when it's time to send them in.  Thanks!

Trisomy 13 and 18 Workgroup

Workgroup Goals:
Improve communication between caregivers and families faced with diagnosis of Trisomy 13 or 18
-    Increase consistency and accuracy of communication
-    Improve caregiver/provider understanding of management options at UNC
-    Increase sensitivity around terminology
-    Improve collaboration between family and caregivers, and among medical providers
-    Understand family’s values and set appropriate goals based on those values
-    Improve provider/caregiver understanding of family decision-making

Questions for families (feel free to answer as many questions as you wish
1.    Please tell me something about your child.
2.    Please share with me memories of the initial encounter when you learned your child had Trisomy 13 or 18.
a.    How were you told?  (Who told you? Where were you? Who was with you?)
b.    What do you remember being told? 
c.    What was the most important thing you heard? 
d.    What more do you wish you had been told? 
e.    What do you wish had not been said? 
f.    How much information were you able to hear at that first encounter?
g.    How did you feel about the way the diagnosis was communicated? (words used, setting, etc)

1.    How did you share that information with your spouse/significant other/extended family?  Is there anything that would have made that easier for you?

2.    Did you receive consistent messages about the diagnosis and prognosis from different medical providers?

3.    After knowing your child had Trisomy 13 or 18, what were your hopes for your child? 
a.    How did these hopes inform your decisions around their care?
b.    Have these hopes and expectations changed with time?

1.    Did you feel support for the decisions your family made with regards to interventions/treatments from the medical team?

2.    Did your decisions about intervention evolved over time? If so, how did they evolve?

3.    What was it like to care for a child with Trisomy 13 or 18?

4.    What was been most challenging in providing care for your child? 

5.    Could you please tell me about any barriers you encountered in caring for your child?

6.    Which aspects of caring for your child were most fulfilling?

7.    Could you please share with me any resources that were helpful for you in caring for your child?

8.    Are there ways doctors and nurses can assist families who care for a child with Trisomy 13 or 18?

9.    Is there anything you want to say to physicians in training (or nurses in training?) when interacting with a family whose child has a diagnosis of Trisomy 13 or 18?

10.    Do you have any other advice or guidance for us?

You can e-mail in your answers to the questionnaire OR discuss it by phone.  Our contact is Wayne Price, wayne_price (at    ) , 984-974-7854

If you would like me to e-mail you the questionnaire as an attachment, just let me know.  Otherwise, just copy and paste the questions.

Mr. Price seems very earnest in really wanting this information, so let’s respond and be loud, clear voices for our precious, special children!

This verse always makes me think of our special children:  

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." - Psalm 139:14

Little Firecracker on her 1st birthday - July 4, 2011

No comments:

Post a Comment