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Thursday, July 27, 2017

Trisomy 13- The Story of Addison Faith

   
It was May 31st, 2015, when I first took a pregnancy test after weeks of nausea. At this time I was a single mom to two kids and working long hours as a registered nurse. The pregnancy test came back positive and I immediately broke down to tears. I struggled with the fact of having three kids and was pressured by the father to not carry this pregnancy to term. I decided to contact a local Pregnancy Resource to verify my results and obtain an ultrasound. 

I went in and took another pregnancy test and I knew the result would once again say I was pregnant. I set up an ultrasound for the next week, all the while I couldn’t tell anyone I was pregnant. I don’t think I could ever prepare myself for that ultrasound. I couldn’t see the screen to start the ultrasound, but did remember the lady performing the ultrasound staring hard at the screen. She asked me if I was ready for it and of course I said I was. “It’s twins!” she said. 

The look on my face was one of complete shock as I never imagined I would be pregnant with twins and that there were three different sacks. Three sacks meaning there at one point could have been a third baby! Then came the news that Baby A was 8 weeks with a heartbeat in the 140’s while Baby B was only measuring 5 weeks and heartbeat was only in the 90s. They gave me paperwork on preparing me for the miscarriage of Baby B as they didn’t believe it would survive long. 

In my small hometown, our hospital does not have the NICU and qualifications to handle risky pregnancies so I was referred to a larger hospital to have further ultrasounds done. It was at the 14 week mark that I learned Baby B had passed, but Baby A was looking great. They just wanted to follow-up in 8 weeks to do an anatomy scan and then I would be okay to only see my regular OB doctor. In the meantime I did the Quad Marker blood test that I had always done to help screen for certain disorders. My best friend and I made the hour and a half trip down to the specialist and little did I know my life would forever change. 

During the ultrasound I noticed, while I was 22 weeks along, my little baby was only measuring 18 weeks. This was completely different as my previous two always measured two weeks ahead of time. The nurse finished up and gave me my pictures and told me to wait for the doctor to come and speak to me. It was then that the doctor began to tell me that there was some abnormalities seen on the ultrasound. 

He stated it appeared that the spine was not forming correctly at the base, the brain structures weren’t the ‘Butterfly’ shape they should be,  the right ventricle was thick, and that there wasn’t as much amniotic fluid as there should be. He stated with the very general findings that he couldn’t exactly tell me what the cause was but that likely it was a chromosomal abnormality. I felt my whole world crumble right them. 

Everyone was so excited to find out the sex and I had multiple messages asking how it went. But, how was I going to explain that something was wrong with my baby and they couldn’t tell me what? I would have to come back in a few weeks for more ultrasounds and would also have to see a pediatric cardiologist to take a closer look at my baby’s heart. 

Immediately when I got home I called my OB doctor and told them what was going on and asked for the results of the Quad Marker as I never heard back and was hoping that was going to shed light on what was going on. But, the nurse stated it was a negative result and that it showed no increased risk for any disorders tested for. 

So every 2-3 weeks my best friend and I made the trip to the larger hospital to see how my baby was growing. While there was a thick right ventricle, there was no other heart defect and the function appeared to be good. Though every time I went for the anatomy ultrasounds, there was always another problem seen. At 30 weeks I was instructed to begin twice weekly nonstress tests. While they were only supposed to last 30 minutes or so, I was always there for 2.5 hours as they always were shown to be nonreactive.  

On December 15th I got off a twelve hour shift and went in for my nonstress test. Once again it was nonreactive and my OB wanted to do further testing, called a Biophysical Profile, the next day to further evaluate how my little girl was doing. It was with the failing of that test that the specialist from the larger hospital wanted me flown down immediately. I arrived after the 45 minute flight expecting to be there for another month as I was exactly 35 weeks, but my little girl had other plans. 

After being there for 30 minutes I went into labor, and instead of stopping it they wanted to deliver her. So, just after 8 pm on December 16th, 2015, I gave birth to a 3lb 15 oz and 17 inches baby girl. Little did I know the difficult road I had ahead. At midnight I finally got out of recovery and was pushed to the NICU to meet my baby girl who I named Addison Faith. 

She wasn’t on any oxygen and they said she was doing great. They showed me a small area on the top of her head where her scalp hadn’t fully closed and her extra digit on each hand. The following day when I was pushed back to the NICU I finally got to meet her neonatologist who became my most supportive person. She stated blood had been sent off to do genetic testing and I would likely hear the results in a few days. During the night she also required oxygen to be placed and her blood sugars began to drop. 

By the next day I had noticed that I had never seen her open her eyes and asked the nurse who had been taking care of her if she had. She said no and that she would consult the doctor. We soon found out that the structures of the eyes were too small and would not function as working eyes and that she couldn’t even open her eyes. 

When she was 3 days old I was in my room eating dinner when the neonatologist came from the NICU to my room to tell me that the results were back. Addison had full Trisomy 13. I sat there in shock and asked what this meant for her. She stated that babies rarely make it longer than a few days to weeks and I lost it. 

For the next several hours I sat there crying and trying to ask God why this had to happen to my baby. What did I do to deserve this? What could my baby have done to deserve a death sentence? I was discharged from the hospital and moved my belongings down to the NICU with my daughter. There was no way I was going to leave the hospital for one second while Addison was there. 

Around the 21st of December Addison began retaining fluid and stopped peeing. I sat there for an hour watching them trying to put a catheter in my daughter while she lay there not making a single movement. A plastic surgeon came just before Christmas to look at her scalp. He stated it will heal over on in its own, but when she gets older she likely won’t have hair growth there. Those words hit me hard. Did he not see her diagnosis? There was no when she is older. I couldn’t even believe that he would say that to me. 

She came out of the fluid retention just fine and her heart looked amazing on the ECHO’s. Her kidney ultrasound was perfect and didn’t have a problem with them. The day after Christmas, my family came down and we baptized her as we didn’t know if she would make it out of the hospital. Every day we struggled with Addison’s blood sugar and feeds. We would stop the feeds for a day then slowly try to increase them. I performed her feeds and placing her feeding tube because I wanted to take her home until it was her time to be called home to Heaven. 

At her hearing screen we also learned that she was also likely deaf. My baby was blind, deaf, and with how her brain had formed she would have mental disabilities. It was a few days after I learned her diagnosis that every doctor on her team and the genetic doctor sat and we talked about options. They were fully supportive to whatever I wanted to do. But I knew I wanted my baby to be as comfortable as possible. I didn’t see the point in putting this little baby through procedure after procedure to endure the pain from the procedures for the ultimate outcome of death. They supported my decision to keep her comfortable and work toward the goal of going home. 

On New Years Eve, hospice came in to talk to me. Being a nurse I was fully aware of hospice and what it offers to people. But, this was my baby daughter. I could not give up on her. I needed her in my life and would not accept that fact that she wouldn’t be around. So after letting her make her talk I thanked her and told her I wasn’t interested. So there my daughter and I sat next to her crib. I looked at her and realized how selfish I was being. I couldn’t imagine a life without her. How was I supposed to live knowing I couldn’t hold her, kiss her, or watch her grow up? I wanted what was best for me which was saying no to hospice because I thought that meant I was giving up. But I realized me choosing hospice would give her the best quality of life that she could have and that God had a plan. When it was time for her to go I would tell her to go, and one day I will be there with her. 

I walked out of the room and told the nurse that I wanted hospice and remembered walking down the hallway and sat and cried. I didn’t want people to feel like I was giving up. I didn’t want to be judged. But as her mom I knew this was best. So, the next day we decided we would aim at getting her home on January 4th or 5th. Her blood sugars were improving, but they would send me home with glucose in case they dropped so she wouldn’t seize. She was still on oxygen but was simply room air as a reminder to just breathe. 

On the night of January 2nd I decided to stay in the parent suite so I could get a couple hours of rest so I would be ready to take her home knowing she didn’t sleep much. At 3 am on January 3rd, my alarm went off to wake me up to pump. I decided to ignore it and sleep for another 2 hours before I pumped because I was so tired. I fell back asleep to then be woken up to a knock on the door. I sat up and my heart dropped as I couldn’t see why someone was knocking on the door at 3:20am. I opened the door to find the resident doctor standing on the other side. She said Addison had taken a turn for the worse and she was requiring full oxygen at 6L to maintain her oxygen saturation at a good level. She said at this point we could turn her oxygen back to room air and let her go peacefully if that was my wish. 

I asked her if this was her showing us that it was time. She shook her head yes and asked me to come be with her. I saw her lying in her crib with a few nurses around her bed. I asked for them to turn the oxygen back down and let me hold her. She was quiet and wasn’t making a fuss. I cried and talked to her hoping that she could hear me. Around 4am she went off the monitors. 

The doctor came in saying she was no longer breathing and would give me a couple minutes. A few minutes later she took a breath. Then there was another breath and I saw her vitals come back on the screen. The doctor told me it sometimes happens one time or multiple times before they actually pass away. I prayed that it wouldn’t happen again and that if it was her time then she would go.  She began to get fussy and whimper. We medicated her so she could be comfortable. 

It was at 7:06 am on January 3rd that Addison finally took her last breath. I sat holding her for the next 8 hours. I refused to leave. I didn’t want to walk out of that hospital without her. When I came in 18 days earlier I had no idea I would walk out without my baby. On January 6th I buried my angel. It was the last time I got to touch her and kiss her. Not a day goes by that I don’t think about her, but I now know it was God’s plan and that she will always be with me as long as I kept her memory alive. 

Please see the Trisomy 13 page for more trisomy 13 journeys, resources, and more. 





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