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Don't Expect to...

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 our family was complete. Three beautiful healthy baby girls or so we thought. Our three year old was a vivacious sweetheart and our twin girls although two months early were 7 months old and thriving. Then on one crazy summer night we found out that we were having baby number four. In our situation getting pregnant was such a struggle so to conceive without trying was quite a shock. In the back of my mind I thought “maybe we will have a boy!” 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” and “dwarfism”. The fact that our baby was a girl quickly became a very unimportant detail. 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 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. At 29 weeks pregnant I was even advised by a Doctor to terminate my pregnancy which was not ever an option that we would ever consider. There are over 200 types of dwarfisms and her exact type would not be determined until after her birth. She also was believed to have a cleft palate which was causing my amniotic fluid levels to be too high which could spark premature labor. 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 that I was carrying. Perhaps we would only have this time together and instead of crying I made the best of it and just focused on her. The night before our daughter was born was my breaking point and the only time I would cry during my stay. I couldn’t stand waiting any longer and wondering about her outcome. At 4 am I went into labor and at 6 pm the next day our daughter was born. The delivery was not a joyous experience at all and was so different from when our other daughters were born. Matt and I held each other close in great fear of what was to come. At 6:07 pm Piper Hope was born and she cried! She was beautiful and with the help of a respirator was breathing and being transported to the hospital NICU where she would stay for 2 months. She did not have a lethal form of dwarfism but has a very rare form called Kniest Dysplasia in which there are only about 200 known cases in the entire world. Piper Hope is now 5 months old, breathing on her own 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. I am proud to have four beautiful daughters and will do my best as a mom to embrace their differences.

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