The Queen, Vivien

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In December 2015, we were pleased to learn we would be having our second child. Just like any other pregnancy, seeing the OBGYN was an initial must. We went in and got our definite proof of pregnancy, and learned that our baby would be here on 8/18/2016. A month passed and we went in for our second appointment where we were asked if we were interested in genetic testing. Not thinking the results could be anything but normal and I was going to get to see the baby on ultrasound, we were all for it. We came back a week or so following that appointment so the timing was right and had the ultrasound and blood draw. When we left we were so excited to have seen our little “nugget” on the screen. A week passed and we had not given the testing another thought, until we got the call. The call that would ultimately change the dynamics of everything. ” We have your genetic test results, they have come back abnormal, your doctor would like to see you as soon as you could possibly come.” Naturally, I start panicking. I call my husband crying telling him there is something wrong with the baby, and the doctor wanted to see us immediately. We went straight there.

Waiting for the doctor our patience was growing thin and every second that passed more and more anxiety filled the room. Finally when he walked in, the look on his face seemed to confirm our fears, something was really really wrong. “Your screening has come back with some numbers that we don’t like to see, the baby has shown markers for trisomy 21 in the odds of a 1 in 18 chance, which is Down’s syndrome. They have also shown a greater than 1 in 10 chance of trisomy 18.” We then ask what the diagnosis of trisomy 18 meant, because odds were that was what we were looking at. “Unfortunately, it is considered incompatible with life.” The floor dropped a feeling that is so unexplainable came over us. The baby is only 9 weeks in the making and is already given no chance to survive. How could this happen to us? The doctor then recommended we take the test Maternity 21 to completely confirm the diagnosis. We agreed. Two weeks of pure agony went by. Not one moment of any one of those days weren’t consumed with the thought of our baby having this condition. Agony is not even the correct term but it’s as close to the feeling that words come to. After calling everyday to see if our results were in, they finally were 16 days following. “Mam your results are in” naturally I ask the girl on the phone what they were. After a long silence her voice came through the phone like a punch in the throat “It is positive for trisomy 18″. I melted. The results were in. We went to the doctor where he gave us our options.

We went to the doctor where he gave us our options. Naturally we were giving our baby any chance of survival, even if it was only long enough to hold the baby. We were sent to a specialist to go over problems we were to be looking forward to, if we were given the chance. We had a very detailed ultrasound that showed NO markers for trisomy 18. The specialist came and suggested that we do an amniocentesis, because it was possible that only the placenta had trisomy 18 and the baby did not. He had never seen it but had heard of it happening in very rare occasions and thought because of the lack of any physical markers this was possibly one of those occasions, but we had to wait until we were 16 weeks until we could have it done. Another long painful wait. We made it to the big day. The test wasn’t too bad and we were reassured by the color of the amniotic fluid that her kidneys were working, which was a good sign. Another 2 week wait for results. We waited patiently for the call this time, the longer it took for them to call, the less the urgency. Finally they did call, the specialist was on the other end of the call ” I am so sorry for any false hope I gave you, the result 100% confirm full trisomy 18″ immediately following the confirmation, ultrasound began to find a few different markers (choroid plexus cysts, omphalocele and a ASD & VSD).

We took it day by day and week by week waiting to see if the baby would even make it to term. We got to week 38 and the baby was still holding strong and a planned c section went underway on 8/8/2016. It was the most emotional day. Going in to have your baby but not knowing if it is going to make it. “12:22” said the surgeon followed by silence. Not a cry not a whimper. My husband went over to see the baby which was behind the drape from me. I then asked a lady standing right next to my head the words I had waited for 9 long months to ask “Is she alive?” She looked at me and smiled “She is”. My eyes filled with tears and so many emotions ran through me. I was going to get to hold my baby alive and tell her I loved her. Soon after that the doctor rounded the drape holding the most precious thing I had ever seen. My 3lb 12oz Vivien. He placed her in my arms and my husband videoed. “Be sure to love on her as long and hard as you can, you don’t have much time.” So I did just that. Vivien is now 4 months old, is not on any medical device to help keep her alive and eats on her own. The only hump we have to get over is closing her VSD. She has confused and surprised all the doctors. We have a long road ahead of us, but she is proving to be nothing shy of a miracle.

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