Our story began July 2018. I found out I was pregnant.

My youngest was 15 years old. The doctors told me I would

not be able to have anymore children after my miscarriage

many years before. This surprise to us was a "miracle".  We were

excited.  I felt blessed to grow our family and share this miracle with

my husband.  My first appointment at 7 weeks crushed me.

This appointment would provide me with my first ultrasound. 

My regular ob/gyn expressed to me that I had more amniotic

fluid than normal. She would refer me to a high risk doctor since

I was past the age of 35, 41 to be exact. The other reason was

because there may be an issue with the baby. She asked me if I had 

ever heard of Edwards Syndrome. She wanted to draw some

blood to check for any signs. I agreed and she told me she would

call with results which would be about a week. Before I left she told

me to NOT do any internet searching because it would make me

worry before the results were back. Of course, telling me that was like

telling a kid not to do something which would make them want

to do it. I was devastated looking at the pictures on the internet.

The internet kept saying the babies were “Incompatible with life”. 

I went to work ( 5th grade teacher at the time) stressed out. Four days later, I received

a personal call from my doctor confirming positive test results. My knees buckled. She told me to come in if I wanted to talk to her and ask questions. I immediately went to one of my Assistant Principals and sat in her office and cried as I explained what was going on. She insisted I go home to process the information. I went to my doctor and she talked with me for about 45 minutes. She explained what she knew about Trisomy 18. She told me things could possibly be just fine. As an educator and mother, my research deepened. I told my husband, but he was very optimistic.

 

We started our journey seeing my Maternal-Fetal Medicine Specialist. The first few months were very nerve-wracking. We found out we were having a girl at about 11 weeks. It was placed in an envelope for us to find out together. I was secretly praying for a boy for my husband, but he was excited to have a baby girl.  We immediately decided on a name, Kinsley (to stick with all of my kids' name starting with a K) and Marie (my husband's mom's middle name).  I was seeing both doctors. The journey was not what I expected. My high risk doctor was not as positive or optimistic as I wanted, but I could tell she was one of the best. There was a point during my pregnancy when she didn’t know why I was sent to her. Kinsley was not showing any of the markers for a baby with T18 in the beginning. During one of my visits Kinsley’s  heart had shifted a little to the right. She could not see why.  I had declined the amniocentesis she kept bringing up in every visit.  I continued to worry and stress while my husband continued to be positive. The whole family was excited and optimistic. As my pregnancy progressed, my high risk doctor scheduled a visit for us to visit the NICU. I went alone because my husband, a First Sergeant in the Army, had to work. I spoke with a doctor named Paul Mann. He was the first doctor besides my regular ob/gyn who put me at ease and showed so much empathy and compassion. I saw the “father” in him and not just the “doctor”. He explained how he would wait until Kinsley came to tell them what she needed them to do.  Kinsley made it difficult for them to truly know anything. She was just a very active baby in the womb.  My visit to the NICU initially had me excited to meet my baby girl.  Dr. Mann mentioned she may need to be placed in an ECMO machine.  There was a baby in the ECMO and that broke me down. I met a wonderful nurse who told me that she would remember me and make sure Kinsley was taken care of if she had to come to the NICU. After that visit, I had an MRI, CT Scan, a visit with a cardiologist, and a long line of other specialists. This all occurred by my 22nd week. One doctor explained it looked like a hernia. He said they sometimes hernias fix themselves. He drew pictures showing us from the least to greatest severity. He told me to hold her at least until 27 weeks.  I was put on light duty. I started having anxiety and panic attacks frequently. My blood pressure was high with every visit to my high risk. She was scary to me. I know she had to give me medical science, but her bedside manner was not the best.

 

As I got closer to delivery, I joined some Facebook groups that my ob/gyn recommended. These parents were my support through all my emotions and questions.  Our family continued to prepare for Kinsley. I began to “nest” as the old folks would say. The doctor planned for us to arrive at the hospital on Sunday, March 10, my 39th week. She wanted all doctors available just in case. 

 

We checked in and got settled. A few hours later, my water broke and it was a rollercoaster afterwards. Kinsley was not taking labor well, so I headed in for an emergency cesarean. Kinsley was born on 3/11 weighing 3/11. She was born six days before my birthday. After I was in recovery and waiting, the doctor came to talk to us. She confirmed that Kinsley had T18 and she told the reason for the heart shift was Kinsley’s intestines were in her chest. She told us to say our goodbyes and to allow our other children to come see her. I refused to accept that. I went to see my baby and my heart felt heavy. She was hooked to this huge machine they called the “Cadillac”. She was on 11 types of meds. It was there that I had a stern conversation with the doctor and I spoke positively over her. In a matter of hours the doctor came to me and expressed the change she couldn’t explain. Kinsley was fighting, but she needed blood and we needed to consent.

 

The next 111 days were like running up a hill, while also being a time of growth and immense love. Kinsley taught the doctors some lessons they were not ready for. I understood the doctors needed to give us the medical diagnosis and information, but as a believer, I KNEW the doctors didn’t have the last say so.  Kinsley “should not have been breathing”, they said. She proved them wrong. She had surgery at one month old to correct the intestine issue and came out like a champ. Her weight continued to increase. The nurses were the best. The nurse I met a few months earlier, was actually one of her nurses and remember me.  I could not understand the huge disconnect in attitude between the doctors and nurses in the beginning. We had one doctor who always treated Kinsley like any other baby in the NICU who needed care and not like a death sentence. Kinsley was slowly weaned off most of the meds and graduated to a baby crib. 

 

During this time I continued to research, talk to other families like us, and other doctors in other states. I reached out to several doctors that specialized in Kinsley diagnosis. We tried to have her moved to the Boston Children’s Hospital.  We were given reasons as to why she needed to be where she was. We reached out to Atlanta Children’s Hospital and Omaha. Everyone was helpful and needed us to have Kinsley moved. We suffered for weeks as we listened as doctors spoke negatively and pushed out the time as we wanted to transport here to another hospital that was better informed and equipped to help us. There were excuses given that Kinsley needed to gain weight for them to agree to do any of the necessary things required. The hospital drug their feet with helping my newborn daughter who was defying all the odds. God called Kinsley to be with him on July 10, 2019. I held her as we were surrounded by family and friends. I was blessed to be there as she took her first breath and blessed to be with her and hold her as she took her last.  This isn’t the end, it’s only the beginning!