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Emma's Journey with Trisomy 18

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On Christmas Eve, 2015, we found out we were expecting our second child. My husband, Sean, and I (Samantha) were filled with joy. Our son Julian (who just turned 3 in May 2016) was excited to become a big brother. My appointments all seemed pretty standard, aside from the weekly shot I had to be given to prevent preterm labor. I would be given this shot until week 36 of the pregnancy due to the fact that Julian had been born at just 34 weeks.
     Our 20 week anatomy scan was something we were very eager to go to, not just to check on baby, but to find out if our little gift was a girl or boy. Its a GIRL! We couldnt be happier! What happened a few days after was something any parent would dread. A call telling us that they have found abnormalities and I would be sent to a specialist. I felt like time itself had stopped. Instantly we were worried about our little girl and we didnt have a clue what was wrong yet. The appointment with the specialist was an agonizing week and a half away. And the hospital we were being sent to was an hour away, and also has a toll bridge on the way. Little did we know we would be making this trip many times in the future, and also told we would need to go there for labor and delivery when that time comes.
     As I was walking the halls of the hospital to my appointment, my heart was pounding and my palms were sweating. I was so nervous and had no idea what to expect. The ultrasound took an hour and a half and my stomach was sore. After the doctor looked over the 80+ images, she took me to her private office. I began to feel panic because I could tell by her face that it wasnt going to be good news. As she began to explain what was found and what it could mean for Emma, my mind began to fog and I was filled with fear for my baby. She explained what T18 (www.trisomy18.org) was and told me that 50% of babies dont survive the pregnancy, and less than 10% that make it will live to see their first birthday. I instantly fell apart. I couldnt breathe, I couldnt speak. The doctor had to call Sean and my mom to tell them what was going on because I was too upset to talk.
     Sean was unable to get out of work to be with me at that appointment and I felt completely alone. One of the many struggles of the military life is having your spouse gone all the time. I have gotten used to going to my appointments alone, but if we had known what we would be hit with we would have fought for Sean to be there with me. But nothing could have prepared us for something so devastating. 
     Emma has many severe heart defects, which include a large Ventricular Septal Defect (VSD)- hole between the lower heart chambers, 2 Atrial Septal Defects (ASD)- holes between the upper heart chambers, Coarctation of the Aorta (CoA)- narrowing of the aorta, and Double Outlet Right Ventrical (DORV)- both the pulmonary artery and the aorta are located on the right side of the heart when the aorta is supposed to pump from the left side. If our sweet girl stays strong for us, she will have to undergo multiple open heart surgeries.
     To be 99.9% positive that Emma had T18 like the doctor suspected, she recommended I get an amniocentesis done. She would insert a long needle into my stomach that would go through the fat, muscle, uterus, and the amniotic sack, so they can extract fluid from around her to be tested. Despite being scared of the risks, we decided to do it so we could know for sure. It took over a week to get the results back, but in my heart I already knew the answer before the call. I had spent many days crying already, but after the T18 was confirmed I spent many more days in tears. We were absolutely heartbroken.
     We decided to fight for our baby. We will not give up our fight for her. She has been so strong so far, and we love her too much to give into the statistics. We wont stop fighting until she decides she cant keep going. But she is always kicking hard and showing us that she hasnt given up yet. She is due August 29th, 2016, and we cant wait to hold her in our arms and show her just how special she is and how much she is loved. We dont know how much time we will get with her, but we will cherish every minute we are blessed with.
     We are extremely grateful to our family and friends for all of your love, prayers, and support during this tough time. We love all of you very much.
     These funds will help us take care of anything Emma may need, and also make sure that her family is able to be with her for every step of her journey, however long that may be.
     We sincerely appreciate your donations, Thank You So Much!!!

Love Sean, Samantha, Julian, and baby Emma

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Donations 

  • Anonymous
    • $100 
    • 7 yrs
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Organizer

Samantha Marie Caliebe
Organizer
Bremerton, WA

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