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Sami's Story

I found out we were expecting in March 2009 after only two months of trying. I was so excited to add to our family. I didn’t share the news with my family until Easter Sunday (4/12/09), everyone was so happy for us. Our due date was November 15, 2009 (my dad’s birthday). Our son Julian was going to have to learn to share his birthday since his is on November 13th (my sister’s birthday)!!!! Being pregnant for the second time made me feel so beautiful, I was going to bring another baby into this world to love and cherish forever.

On my first visit to the doctor he did an ultrasound, there was this tiny life in my belly, I was already in love. He informed me of the Nuchal Translucency (Nuchal scan - Wikipedia, the free encyclopedia) test to see if there is a possibility of any defects. I chose to take the test not because I was afraid of anything being wrong but because it meant another ultrasound and another chance to see my little one! I seriously was not worried one bit because my son Julian was healthy and well I was naïve to think that something could be wrong. I remember that day so clearly, I was so excited to go to the specialist for this special ultrasound. A few minutes into it the doctor was very quite and she kept measuring the baby’s neck over and over again, still I thought nothing of it. She gave me a picture, sat me up and told me she believed something was wrong with the baby because the fluid in the back of the neck was measuring too high (a huge red flag for Down syndrome). I believe the measurement should be around 2.0, for me it was 7.5! She suggested my husband and I to do further testing. I went alone to that appointment so I called my husband crying hysterically. I remember walking out of there crushed. I right away made a follow up appointment to get the CVS (Chronic villus sampling) done and for my husband and I to get some genetic testing done. It of course would not change my mind about carrying full term but I wanted to be fully prepared for the road ahead. At 12 weeks I went in for that procedure, I was so scared. I won’t lie it hurt like hell especially since it had to be done twice because the first time around she wasn’t able to get enough fluid. Anyhow we waited what seemed like forever for the results.

Finally two weeks later on May 28th we got a phone call with the results, our baby did not have Down syndrome! I was so excited I even for got to ask if I was having a girl or a boy. It was my husband’s birthday weekend we were so excited and even more so because we were having baby girl! I knew we were not in the clear with having something wrong because they said it could also be a sign for a possible heart defect. On June 1st we went to go speak to the genetic counselor to go over our results. Everything came back fine except that the baby and me both have chromosome #2 inverted. That was not a cause for concern so that made us really relieved. That day an ultrasound could not be done but it was scheduled for later that week. At this point I was relieved, things were still looking good for our baby girl who we named Lauren Samantha.

I went in for another ultrasound, me being naïve again I went alone. Well my world came crashing down on me. The specialist diagnosed our baby with Encephalocele. Encephalocele: Definition from Words cannot describe that feeling, I was scared and confused. How could this happen to us? The genetic counselor advised me to terminate since they believed my baby would die in utero and put me at risk. I was a mess but that very day we went to speak to our priest. From that point forward we decided that this was going to be God’s will. God would carry us through. It was so scary to think that our baby girl was going to suffer in one way or another and that just broke my heart. Never in a million years would have seen myself in this situation. At 18 weeks I was scheduled for another ultrasound and again more bad news. They diagnosed her with having HLHS (Hypoplastic left heart syndrome - Wikipedia, the free encyclopedia-) and Diaphragmatic Hernia, again they recommended that I terminate. I had to make it clear early on that because of my beliefs I was going to continue my pregnancy. I had to make sure they were on board with me because I was afraid of not getting the proper care since they insisted that terminating would be best. So for the remaining time, I left it up to God. I tried to make the best of and enjoy every second possible. Our baby girl kept growing, not like the doctor’s wanted her to but she kept going. Later in my pregnancy I started to feel the side affects by developing Polyhydramnios (Polyhydramnios: Too Much Amniotic Fluid - March of Dimes). After that was drained out (4 liters of fluid to be exact) I started to feel a little better. I then developed Cholestasis ( Cholestasis of Pregnancy : American Pregnancy Association).

On October 26, 2009 at 38 weeks I gave birth to my sweet baby girl who we nick named Sami. She weighed 4 lbs and measured 15.5 in. Labor went by quick and in 3 pushes she came out, it was beautiful. Sami was with us for 1 hour and 40 minutes; it was magical and so peaceful. The sense of peace we felt could only have come from God holding us through. God was with us and everyone in our room felt that peace with us. As soon as she was born they realized that she never had Encephalocele. Sami was supposed to be a twin. She was conjoined with her twin who we named Faith. On the mass attached to Sami there was a perfect little eye ball, nose and a little ear. That gave me such comfort to know that Sami was strong enough to go 38 weeks while having that large mass attached to her, she fought so hard for them both. She truly showed me what strength is. My life is forever changed and I am trying to adjust to living without her however I would not change anything about our journey. I thank God everyday for giving us the opportunity to meet our angel and spend time with her. She proved all the doctors wrong and came out alive. She was beautiful and perfect in every way.

I am always going to celebrate her life and try to bring awareness to others that although this journey is a tough one it is worth it in every way. I miss her more than anyone can comprehend but I look forward to the day that I get to hold her in heaven. Sami has brought us so much joy and we love to share our baby girl’s story with you. God bless you always and thank you for taking time to care about our baby’s life.