My Birth Story: Trisomy 21

March 22, 2018

 

 

Our baby girl was born on December 19,2017 via C-section and this day was the most amazing and most terrifying day of our lives. We arrived at the hospital at our scheduled time and went through the prepping process before it was our turn to have the surgery. I was so afraid in the weeks leading up to this day, my fears consisted of having a panic attack, fear of getting nauseous when laying down on the operating table, and I was terrified of the recovery, and how painful it would be to stand up or walking again. The time had come, and I walked into the operating room and every fear I had was washed away as soon as I heard my baby girl cry for the first time. I couldn’t believe how quickly the doctors had pulled Amor from my tummy…it was an instant emptiness. I cried and looked over to my husband who was already by Amor’s side taking pictures and telling me over and over how beautiful she was. It was finally my turn to hold my baby girl…. a moment I had dreamed of forever. The moment I looked into her eyes I knew…. I knew what I didn’t want to be true. I remember thinking to myself “Why does she look like she has down syndrome?” I instantly was mad at myself for thinking something morbid and already picking apart my daughter’s physical traits fresh out of the womb. I kept waiting for my husband, or a nurse, or doctor to mention something but all they were saying was how big she was and how cute she was and how much hair she had! I started to talk myself out of the initial thought I had when I first laid eyes on her. I started to think maybe she was just swollen from the C-section, and when I was a baby I had very slanted eyes and I am a full faced woman, and the way they laid her on my chest was very awkward so maybe it’s just the angle that I am looking at her right now. The doctors were done stitching me back up, so my husband and Amor went to recovery where they waited for me. I finally made it to the recovery area and was able to spend a couple of hours with my little family before we were taken to our postpartum room. During the entire time I couldn’t get my initial thought out of my head…she had already started to change so much, and I started to see what I thought I initially saw less and less as the hours went by. Our family members came by to meet her and I found myself looking for approval from them asking questions like “Does she look okay to you?” “Do you think she looks swollen?” “Doesn’t she look like a cute little eskimo baby?” But really, I was asking these questions without asking the real question that I was already feeling in my heart to be true. The time had gone by and our family members left, and I had finally mustered up the courage to ask my mom if she though Amor looked like she had down syndrome. My mom instantly told me for lack of better words that I was crazy to even think that! I felt so much better to know that nobody was thinking what I had been thinking and I decided to just let it go and not over analyze my initial impression of my daughter. My dad and his wife came to visit us later and while they were holding Amor I had this horrible feeling that something was wrong. I kept asking them if she was okay and they kept telling me she was fine just sleeping…but I knew something was wrong. I asked again, and I saw the side of her face and she was purple. I yelled for them to bring her to me and I touched her face and it felt ice cold…I screamed and called for a nurse. I have never felt so scared in my entire life… I truly thought that she had died. I felt so helpless as I was still paralyzed from the spinal tap and very loopy due to the pain medication. Several nurses had come in as I told them that she was purple and very cold. I kept asking what was wrong, but nobody was answering me until they finally said that they had to take her to the nursery to evaluate her further. My husband followed them, and he was gone with her for a couple hours while I will still lying helpless in my bed. It felt like an eternity waiting to find out what was wrong with her since my husband had rushed out so quickly with the nurses he forgot his phone, so the time went by very slowly thinking the worst and replaying everything that happened in my head. Later, my husband came back to the room with a head NICU nurse where she explained to me everything that was going on with our baby which ranged from her having oxygen issues, her glucose levels were very low, her body temperature was low, and she asked me if there was anything in my prenatal care that I should inform them about or if there was anything in our family history that they should know about. I told her everything was normal, I had a textbook pregnancy and no issues with the baby. The nurse took a deep breath and said the reason she is asking was because they think Amor might have a slight “case of downs.” In that moment my heart dropped… How could I not know? I knew the moment I met her that she was special…that she had down syndrome. I knew that in just those few hours of becoming a mother that my maternal instinct was right about her health and calling for help when nobody else was seeing something was wrong…so how could I not be right about her having down syndrome? Once we heard the news we were devastated I have never cried so hard in my life. I started to confess to my husband and to the family that I had already been thinking she had down syndrome but that I was so scared to say anything and figured the medical professionals would have said something to us about it as soon as she was born. The days went by…the pain of recovery was horrible, but nothing compared to the emotional rollercoaster of having to be away from your baby and trying to process that she might have down syndrome. On December 23rd by the grace of God Amor was cleared of all the health issues she was having and was discharged to come home with us in the same day I was being discharged. Chris and I have never prayed so hard in our life that our baby could come home with us. As the last couple weeks have gone by just one thing remained and that was her chromosome test to confirm if she had down syndrome. It had been a rough two weeks over analyzing everything during my pregnancy and blaming myself …feeling guilty…feeling lost…but not knowing there was still hope that they were wrong. On January 3rd Amor’s pediatrician called me and confirmed that she was positive for Trisomy 21 which is the most common form of down syndrome. I guess I thought I was ready to hear it but I think I still believed so strongly that she didn’t have it and the odds are 1 in 1200 and I just could not understand how this was happening to us or to her. But in this short amount of time I have realized how truly blessed we are, we still have our baby girl. Amor is still going to have a full and amazing life with us! She has already beat so many odds stacked against her as she is a very healthy baby and does not have the common health issues associated with babies that have down syndrome. We are so thankful to God that we get to be with our baby girl everyday and that her heart is healthy, and that God is already showing us so much about ourselves and our lives through this sweet angel. We still have so much to learn and while we still have our moments and grieve the loss of the daughter we thought we were going to have we are also joyous in the daughter God knew we needed and wanted us to have. I can’t wait to learn and grow with our baby girl…I have a feeling she will be teaching us more than we will be teaching her. We are so thankful for the outpour of love and support from our family and friends. Amor is so loved, and I believe she couldn’t have been given a more suiting name in light of this unexpected news with our little girl and her extra chromosome. 

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