As told by his mother, Tiffany.
At the end of last November, we found out that we were expecting, and we were so happy. We went in for our first check up and found out I was about eight weeks along, at my 12-week appointment the doctor did an ultrasound, because they couldn’t find a heart beat. As I was laying there for the ultrasound, I was relieved and happy to see and hear the heart beat, but then I noticed that the ultrasound tech was not talking to us and something seemed wrong. As she finished taking all the pictures she needed of the baby, and I asked her what was wrong and she said the doctor would have to go over it with me.
When the doctor sat down to talk with us, she said that our baby had multiple abnormalities and that I needed to see a specialist that day. When we sat down we the specialist he confirmed that our Kingslee had Omphalocele, Cystic Hygroma, and a heart defect. An Omphalocele is where the anterior abdomen does not close properly allowing the intestines to protrude outside of the abdomen wall. Cystic Hygroma is cysts or a group of cysts that mostly form on the neck. And with the specialist seeing all these problems together, I was told that it was very likely that my baby had a chromosomal abnormality. The specialist said that my baby Kingslee, probably had Trisomy 18 or Trisomy13. I was also told that babies with Trisomy13 and 18 are not compatible with life. The specialist said I should have an amniocentesis done so they would know for sure if (Kingslee) had Trisomy13 or 18, but I refused to have an amnio done for fear of miscarriage. I knew that no matter if my baby had a chromosomal abnormality or not I was not going to terminate my pregnancy. The only way to get a true positive result when testing for Trisomy while pregnant is through amniocentesis or CVS, both of which are invasive and can cause miscarriage.
I did let the doctor do a blood test called a maternity 21. When the maternity 21 test came back it was inconclusive, because there was not enough of the baby’s DNA in the blood sample. The doctor had the test run again, but this time when the test came back inconclusive they ran the sample anyway, and it showed positive for Trisomy13. Trisomy 13 or Patau sydrome is a rare chromosomal disorder in which all or a portion of chromosome 13 appears three times in the body instead of the normal two times, but even with this news we remained hopeful that it was a false positive.
As I went on with my doctors appointments I was told multiple times that I should terminate, but I fought for Kingslee and told the doctors that I was going to do everything possible to give my baby a chance at life. At every single doctors appointment we got bad news, and I was told at every appointment that his heart could stop beating at anytime. I would lay in bed crying and praying to God not to take my baby from me, but also to not make Kingslee suffer because with all these abnormalities Kingslee would have to go through multiple surgeries.
When I was about 26 weeks along, I went in one day so they could monitor my swelling because the doctor was worried that I had Mirror syndrome, the doctor said was my body mirroring Kingslee’s Hydrops (which was making him take on fluid in his abdomen). At this appointment I they found protein in my urine and an elevated blood pressure, so the specialist sent me to be admitted to the hospital for severe preeclampsia and mirror syndrome. I was told while at Erlanger that they were trying to get me transferred to Grady. Later on in the middle of the night, I was transferred to Grady in Atlanta where I was told that I would have to deliver soon for my health as my kidneys and liver were shutting down.
On Sunday, April 26th the doctor came in and said that she knew that I wanted a C-section for Kingslee, so that he might have a better chance at life and that she wanted to up hold my wishes. She said that the only catch was that if we waited any longer my platelets would be too low for me to be awake during the C-section. So the doctors went on with the C-section, and at 1:44 am Kingslee was born.
As I was laying there, I could hear them say “Baby is out.” But there was no crying, and I looked at my dad who was crying. He looked at me and told me that they were working on him and trying to get him to breathe. After what felt like forever, they finally brought Kingslee over for me to hold, and as they laid him on my chest she said, “I’m sorry. We did all we can do. His heart is beating, but he’s not breathing.”
My heart was breaking as the nurse took Kingslee out to meet my family as the doctor finished my C-section. My precious baby Kingslee lived for 46 minutes, and in those 46 minutes, he was held by family and kissed and told how loved he was. My Kingslee never cried, never opened his eyes, never moved, and never made a sound. We spent hours holding him, taking pictures with him, and letting him know how much we prayed for him, how much we wanted him and that we loved him dearly.
After Kingslee passed, the doctors ran genetic testing that came back positive for Trisomy 13. A piece of my heart is in heaven, and I can’t wait till I get to hold my baby Kingslee again. I would now like to share a poem that my stepdad wrote for Kingslee, he entitled it “The Broken Baby.”
The Broken Baby
Written with love by Terral Cannon
I was given life in my mothers womb
Hoping nine months would be here soon
Little did I know God had a plan
He knew I was broken, I’m in his hands
In no time at all I began to take shape
The psalmist said: I was wonderfully made
Each passing day, I grew more and more
Mom loved me I said thank you lord
A few weeks later I heard a noise
My heart was beating it gave mama joy
Struggling each day, I was broken inside
As people prayed, I could feel mama cry
All the sudden I had fingers and toes
My destiny was heaven, it’s what God chose
I was unable to live in this world very long
But its okay mommy I’m safe at home
P.S. In this life there will be trouble and pain, its worth it all when there’s heaven to gain.
I’ve had so many people tell me that Kingslee’s story has touched their life and I hope that Kingslee’s story has touched your life too. Please help me and my family in breaking the silence of infant loss and help us remember our son, Kingslee.