“I was clueless as to why I just had a bad feeling.”
Brielle Davis, Translocation Trisomy 13, 09/15/2014, Coffeyville, Kansas
Brielle Kinsley Davis was born September 15, 2014 at 4:17am in Kansas. We were unaware that anything was wrong, my pregnancy was normal, I had no sickness, no pain and no complications of any kind. I have a healthy 2 year old as well, my pregnancy with Brielle was very similar to my first. I saw no reason for further testing, Brielle’s heart beat was regular and all of our ultrasounds were very normal.
Sunday we were out of town celebrating her dads birthday and also she has a sister who was turning one on Monday as well, little did we know they would share this day. It’s late and we are on our way back home and my water breaks. I am 36 weeks pregnant. I wasn’t sure what it was as with my first pregnancy, my water did not break. We got home and I took a shower, there was blood so I informed my family and off to the hospital I went.
It was confirmed that my water did indeed break. I was hooked up to IVs and Pitocin was started to kick my labor in gear. Everything was going well, soon after I was able to get and epidural.
As I relaxed and the epidural kicked in I realized I had no name for my baby girl that would be here in the next few hours, so dad, myself, and my sister were bouncing ideas around and we came up with Brielle Kinsley.
Brielle was very active and kicking all around, so much that the monitor kept falling off of my stomach, the nurse came in 5 or 6 times to replace it, the last time she came in was at 4:00am, once again the monitor had fallen off, this time it took her quite a while to find Brielle’s heartbeat, and all the sudden I felt pressure in my pelvic area. I asked the nurse what that was, she responded “nothing” as she continued to search for Brielle’s heart beat. All of the sudden I feel warmth in between my legs, I tell the nurse I fell something, and she pulls back the cover and its Brielle laying on the bed. She proceeds to lay her on my chest to warm her up, while she calls for help. Brielle is on my chest and I notice she’s not breathing, the nurse tells me to give her a minute and I panic, they take her from me and begin to bag her. She is alive but barley breathing. They continue to clean her up and take her out of the room.
My doctor finally gets there to pull out my umbilical cord and then he steps out of the room. When he comes back he is with the new pediatrician he recommended for Brielle, Dr. Bertram.
Dr. Bertram comes in and introduces himself to me, he tells me Brielle is ok, that she is doing fine, she is on oxygen, but he has some concerns with her physical features. He then tells me that Brielle had an extra finger on each hand, she has rocker bottom feet, her arms are locked in her chest, her top lip is thin, her eyes are deep set, and that she has a slope in her forehead. He goes on to tell me that he has to send her somewhere they have a NICU, which at the time was in Joplin, Missouri at Freeman Hospital. They would be here in 2 hours to get her.
Just as he said they were there, they introduced themselves to me and they hooked Brielle up to monitors put her in the incubator and told me I could follow them to the hospital which is and hour and a half away from out home.
I was discharged, I went home to take a shower and pack, I proceeded in route to see what was going on with my daughter. During the time we were there, they discovered that Brielle had two rather large holes in her heart causing her breathing trouble. An ASD and VSD. I was told there were medications, possible surgery or that in time they would close. The next day they started one medication. Throughout our stay they monitored her closely and ran a million tests on her.
Monday the 22nd I asked for an MRI on her brain to see if there was any damage. The doctor agreed with me and they ran an MRI on her. The results came back on the 24th. I was at lunch, my phone rang and it was our nurse telling me the doctor wanted to talk to me. I immediately went to Brielle’s room, he told me the results came back and everything was fine, accept they came across one picture of her skull and they noticed what they thought could be cysts filled with fluid or part of her brain in her skull. There was no way for them to detect what this was so they were sending her to Kansas City to Children’s Mercy where they could retest and find out. That day at 5 they were there to get Brielle.
I went home to spend the next day with my 2 year old and repack, I got to Kansas City on Friday the 26th, immediately the doctors wanted to have a conference with me. I was clueless as to why I just had a bad feeling. All of the doctors got together, I was introduced to a social worker and she led me to the conference room, in there sat 8 unfamiliar faces and me. I was by myself. I went in, I sat down at the chair they had for me, everyone went around the room and introduced themselves to me.
Dr. Killbride was the head doctor, he started to talk to me, his exact words were ” This is VERY SERIOUS, Brielle has what is called Trisomy 13, it is a syndrome, with this syndrome her 13th chromosome has an extra copy making there be 3 instead of 2.” He continued, ” This syndrome is very rare and terminal, meaning that Brielle will not live long and there is nothing we can do to fix this or help her, this is in her DNA. Most babies don’t make it out of the womb and if they do, they only live a few days, not very many make it past their first birthday.”
The geneticist took over, she handed me paper work explaining and gave me a picture of normal chromosomes and then what Brielle’s looked like. They continued to talk and load me with information I could not process. They told me I had decisions to make, such as adoption and other things as far as taking her home, there was nothing they could do.
We stayed at the hospital over the next week, Brielle came off of oxygen, she was bottle feeding and she had good diapers, she was doing very well considering her diagnosis, they insisted I take her home and spend as much time with her as I could, for she would not live long. They set us up on hospice, gave an oxygen and apnea monitor and we went home on October 3rd the day before my birthday.
While at home Brielle did great, she seemed to have very few problems. We spent 9 weeks at home and Brielle got sick, she caught a cold from her sister which easily turned into Para flu for her. We met her pediatrician at our hospital on December 6. That night he chose to send her to Children’s Mercy, he made the call and once again we were off.
When getting there they did some testing for a week they couldn’t find anything. They didn’t know what she had but they knew she didn’t feel good. They started meds and continued to test for Para Flu, 2 weeks later she kicked that, then it was a UTI. During this time the discussion for heart repair was in play, but Brielle had to be negative of any virus, no fevers, nothing concerning going on. Brielle kept spiking crazy temperatures with no indication of to what. They began to test and test and test, still found nothing, but she could not go into surgery with a fever, that means there’s a chance of infection and very high risk. We continued to wait and wait until Thursday January 29th, she went 48 hours with no fever and they said tomorrow there is an opening for Brielle, we are ready.
Friday morning my family and I got prepared to send her off, not knowing the outcome, 6 hours later she was back from surgery and doing great. She is continuing to thrive, though we are still at the hospital while she is recovering, she is doing great, and we are getting closer to going home.