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