Kayli Whistler

Kayli’s Story

Kayli Whistler

 

 

Kayli Whistler
Trisomy 18
Cary, IL, USA
4/21/2009

Kayli is our Sweet Pea. It has been hard getting to this   point,and a long journey. Our little girl has taught many that strength comes   from your spirit and carries your body through life.

Kayli was born April 21st 2009. We found out she had full Trisomy 18 at 18   weeks gestation. We weren’t going to have the amniocentesis but the dr.   convinced me by declaring special arrangements would be needed if our baby   was diagnosed with trisomy 13,18 or 21. Unfortunately,the minute the results   were in, all hope for Kayli was lost in the medical field’s eyes. We were   told it would be appropriate to terminate the pregnancy as Kayli would never   be “normal”. We were told her intestines would be outside her body, as her   stomach wall would not form. Her kidneys, brain, and heart would not develop.   We were told there was a great chance she would die in the womb and I would   bleed to my death if I carried her to term, because her placenta had the same   chromosomes as she did.
My husband and I saw differently when it came to the life-altering decision   no parent should have to make. He believed he would never be able to stomach   raising a child with such conditions, and I have personal beliefs that would   not allow me to terminate the pregnancy.
We agreed to respect each others feelings, and decided to continue the   pregnancy with unfortunate anticipation of her likely demise. It seems every   time we saw the genetic counselor our hopes for Kayli were crushed as he made   sure to let us know the major complications that she was likely to have.
We asked 4 Chicago area hospitals if they would help us treat Kayli if she   had minimal effects of Trisomy 18 and a chance to live a life within our home   as a family. It was then that we learned what “intervention” meant. We   were told by each hospital they would not intervene with her absolute demise,   and would not take any precautions nor “heroic acts” to save her life. This   meant no feeding tube, no bagging her if she needed help in her first breath   of life outside the womb, and definitely no surgeries to correct even the   smallest of irregularities.
It was then that I turned to God. I could not force a doctor to help my   daughter. At this point, Kayli’s ultrasounds were coming back great, with all   her organs fully developed and functioning well. We asked how they determine   if a baby has Mosaic Trisomy 18 instead of full blown and they said if she   lives to be 1 it is then assumed it’s a Mosaic case because babies with full   trisomy 18 don’t live. The dr. continued on to tell us she definitely has   full trisomy 18. I searched the foundation, many others, and researched   hospitals to see if I could find one that would assist in my daughters life   and came up with no answers. I put it all in God’s hands and asked for his   help with dealing with the negative doctor views, the hurtful alienation by   daughter was receiving, and the fact that nobody was calling her by name.
We had to fight for oxygen at birth and heart surgery for Kayli. Kayli had to   fight much harder than we did, but then again…she had more faith and   strength than we did. Kayli went on to survive 32 minutes of Cardiac arrest   (she passed away for more than 1/2 hour and came came back to life on her own   terms!), 7 weeks with Endocarditis and Sepsis (infections) while a hospital   kept sending her “home to die” before treating her, a home care   accident resulting in a trach, and surgical mishaps that include a perforated   bowel and placing a gtube in her colon instead of her stomach!

Fast forward, 4 years later, and Kayli is still here with us! She continues   to be rejected by some doctors, but we have learned to walk around them,   praying that one day they will notice how extraordinary our lives are now   BECAUSE of Kayli. Because of Kayli, we have seen miracles, witnessed peace in   death, found unbreakable faith, loved unconditionally, and we have found MANY   soul friends.

Kayli is the youngest in a family of 6. Her 3 older brothers have shown her   the way, as each of them has a rare syndrome/disease themselves! Each of our   4 extraordinary kiddos has shown us miracles, and strengthened our faith. We   are a VERY Blessed family, thankful for the Trisomy Journey created   especially for us!

You can follow Kayli’s story at www.trisomy18.blogspot.com and watch videos of her at www.youtube.com/kellywhistler1

If you are looking more support for a Trisomy lifestyle, please visit www.trisomyfamilies.org or the Facebook group, Trisomy Families.