March is Trisomy Awareness Month

My husband and I knew we were ready to start a family, unfortunately we got the news he was going to be deployed July 2013. So we prayed about it and decided that we would let God decide if we would get pregnant before he left for deployment. March 2013 we found out we were expecting and he left for training April 2013. We soaked in the excitement and he was able to go with me to my first ultrasound appointment. It was an exciting and scary time. We actually found a doula who was a military spouse to help us in our journey since we were pretty sure I would have our baby while he was in Afghanistan. Corey would have one week he would get to come home in July before officially leaving.

I was 22 weeks when we did the ultrasound so he could be there, and we could see the baby and find out the gender together. Afterwards we planned a going away party and gender reveal for our family and friends. Corey and I went to the ultrasound filled with so much joy. We found out in the ultrasound we were having a baby girl and we were over the moon excited. Then the ultrasound technician said “Wait a minute I’m going to have the doctor come talk to you.” This being our first pregnancy we didn’t think twice about it.

However, when we met with the doctor we learned that our daughter — who we named Kamry shortly after her appointment — had several health issues and they believed she might have a chromosome diagnosis. We decided to do blood work so we could find out what was going on before Corey left. A week later we found out that Kamry had Trisomy 13, a diagnosis we knew nothing about. Each baby with Trisomy is dealt with different challenges: Kamry had a cleft lip/palate, extra fingers, and heart condition. I was having an out of body experience from the shock but through it all Kamry kept kicking while the doctor gave us the very hard news. We later nicknamed her “Super Girl” because we knew she was going to be a fighter. With the shock of this news, we decided to call off the gender reveal party but have the get together to let everyone see Corey and share the news we received in person.

Our hopes and dreams were to be able to have our gender reveal party and share the exciting news with our family. Instead, it was more serious sharing about her condition, and explaining the doom and gloom the doctors gave us about her prognosis that we may not meet her alive. We cried, prayed, and still celebrated the fact God had blessed us with a little girl who seem to be a fighter.

We dreamed about what the nursery would look like, how life would complete change with having our first baby. We ended up taking a different approach to our baby shower and did a blessing shower. We did a few special gifts of things we would need in the hospital, special outfits, blankets but we spent time praying and celebrating the life Kamry had already lived. We were blessed by Imaging Miracles who did several ultrasounds of Kamry so our family could see her moving around. We shared a video for others to see her precious life.

Unfortunately, the local hospital did not believe in the same approach of helping Kamry as we did. So we got a referral to St. Louis to see the high risk doctors there and made a plan to deliver her at Barnes Jewish Hospital and Kamry would go to the Children’s hospital NICU. In not knowing how much time we would have with our daughter, my husband was released from his deployment to help me navigate these health decisions and then be there when I gave birth. For this we are forever thankful because we know we would never get this precious time with our daughter back if he had been gone.

On Oct. 14, we had a doctor appt in St. Louis and learned I had preeclampsia with extremely high blood pressure. It all happened very quickly being sent to L&D triage and doctors telling us we needed to induce not because of Kamry’s health but due to me being high risk now of having a stroke because my blood pressure kept getting worse and I was very swollen. We asked the doctors for a day to pray about it and they gave us an hour due to how severe I was. We felt peace that I needed to be induced because if I didn’t make it then there wouldn’t be a chance that Kamry would.

They started the induction and planned for us to give birth to Kamry on October 15 during the day so she would be surrounded by several teams of doctors/nurses (totaling 22 in the operating room) when she was born. Our doula and family were able to make it in time before we gave birth.

On October 15, 2013, Kamry Ann entered into our lives and lived nine beautiful days. I got to touch her before they wheeled her off to the NICU. She battled different obstacles, the main one was her breathing. I was able to hold her, feed her my breast milk through a ng tube, and so many other special moments in those nine days. Kamry was doing well enough they actually talked about discharge after she received a trach to help with her breathing. Our little girl’s heart was filled with so much love but wasn’t able to stay on earth with the one she had. She passed away peacefully before her surgery even began on October 24. We were blessed with nine amazing days with our daughter.

OAW came into our lives after we received Kamry’s diagnosis. They were just beginning services, and someone connected us to them. We were blessed with beautiful maternity pictures. We gave birth to Kamry in St. Louis, and at that time OAW did not yet have established photographers in the area. Thankfully a friend of mine found a local photographer to take pictures of Kamry and us. But founder Michelle Cramer immediately saw there was a need for photographers in St. Louis because many of the children OAW serves have surgeries or are even born there. Since then, OAW has established a strong base of photographers to serve the St. Louis area.

OAW did bless us with pictures of our celebration of life service. Since having Kamry, I have had three rainbow babies. OAW offered pictures through my first rainbow maternity and newborn photos. The support that was given through that second pregnancy meant a lot because the rollercoaster of losing a child and pregnant with another baby is joyous and sad.

OAW provided rainbow baby pictures.

OAW is so close to my heart that for three years I served on the Board of Directors as the Family Advocate. This allowed me to connect to other trisomy families to give support, resources and to just listen. I have been apart of the wonderful carnivals they do for the families, the butterfly release and so many other amazing events.

I also started providing heartbeat lambs to the local high risk pregnancy doctors in our area in honor of Kamry so that anyone who received a difficult diagnosis while pregnant could record their baby’s heartbeat. OAW supported this dream and partnered with me to continue to provide heartbeat lambs in our area for the last several years.

I am blessed with five beautiful girls; four are on this side of Heaven. I continue to volunteer for OAW as I am able, and I advocate for any family with Trisomy diagnosis. It’s a journey that none of us should have to go through alone.

I look forward to seeing Kamry in Heaven someday but until then sharing her story and how God made such a huge impact not only in our family but so many others. I love that my girls share about their sister Kamry and even through our sadness we can find gratitude and ways to share joy with others. This journey of child loss is a very difficult one and I continue to pray on how God will use our story to help others.

By Krista Thompson
Mother to Kamry Ann “Super Girl”
Trisomy 13

OAW also provides free holiday pictures each year.