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Don't Expect to Hear Her Cry

Everyone always says when they are pregnant that “we don’t care if our baby is a girl or a boy as long as they our healthy” that phrase began to hit hard during my last pregnancy. One year ago and after almost two years of fertility procedures we thought that our family was complete. Three beautiful healthy baby girls or so we thought. And then on one crazy night of mixed feelings we found out that we were having baby number four. In our situation getting pregnant was always a struggle so to have a surprise baby was quite a shock. In the back of my mind I thought “maybe we will have a boy!” Now when I think about that thought I realize how selfish that I was being and how I should have been thinking about the healthy part of my future child. At 18 weeks we went for “the” ultrasound that would change our lives forever. As we entered the room I secretly crossed my fingers to hear the word “boy” but instead heard the words “skeletal dysplasia” followed by the word “girl’. We had no idea what that meant and then the Dr. said the word dwarfism. At first my husband Matt and I were ok with that. We both teach at the same middle school and one of our students is a little person. He is a great kid so Matt and I looked at each other and I said that’s ok we will love her no matter how tall. Then the Dr. explained that he believed that her type of Skeletal Dysplasia could be incompatible with life and that he thought that it could be a lethal form due to her small chest size. Our faces fell and we both started to cry. How could this have happened? We are both 6 foot tall. How could we ever explain to our 4 year old that her baby sister was probably not going to live. How could I have dreamt about having a boy when I should have been praying for my child to be healthy. For the next 12 weeks we went to see specialists and had about 20 more ultrasounds and several opinions about what type of dwarfism that our daughter had and whether or not it was a lethal form. She also was believed to have a cleft palate which was causing my amniotic fluid levels to be too high. At 29 weeks pregnant, I went into labor and was admitted to our local children’s hospital. I would live there for the next two weeks on hospital bed rest. The hardest part of that stay was the uncertainty of our baby’s life. It was determined by the Dr. at the hospital that she had Asphyxiating thoracic dysplasia. A lethal form. We were told that we should not expect to hear her cry when she was born and that her lungs would collapse when she took her first breath. My time at the hospital was both devastating and beautiful at the same time. I missed my daughters at home so much but I got to spend all of my time with the precious baby in my stomach. Perhaps we would only have this time together and instead of crying I made the best of it and just focused on her. I also had the chance to meet Sister Brenda who was part of the clergy staff at the hospital. She would sit with me and listen and helped to give me faith and hope. The night before our daughter was born was my breaking point and the only time I would cry during my stay. After several hours of labor our baby girl was born. Matt and I held each other close and heard our baby cry! She was beautiful and with the help of a respirator was breathing and being transported to the hospital NICU. She did not have a lethal form of dwarfism but has a very rare form called Kniest Dysplasia. Piper Hope is now 6 months old and has the most heartwarming smile. She will face many challenges as far as her bone development is concerned but will most likely be able to have a long and fulfilling life. She is the greatest gift that our family could ever imagine. She has taught us about what is important in life and to appreciate all that we have and that our family is at last complete.

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