Faces of PKS
Saliyah was born August 23, 2012. She is our second child. During our first ultrasound appointment, the doctor noticed that there was some fluid and swelling in and around Saliyah’s neck and head. This immediately worried us because this was not present during any of our son’s ultra sound pictures. The doctor told us that it was not normal but not to panic just yet. After a second ultra sound picture the swelling and fluid was still present and seemed to either get bigger or more noticeable. This concerned us greatly. We were given a lot of scary information about what could be the cause of it. We were ultimately given the option to terminate the pregnancy, but that was never an option for us.
Saliyah was delivered by c section, and immediately we knew something was wrong. Her facial features I saw a lot of during research on genetic disorders prior to her birth. Upon her arrival her breathing was extremely shallow, she couldn’t eat from the bottle and her body was very limp. She also had a lot of fluid in her lungs. The doctors were just as worried as us and immediately called the genetics team to evaluate her. After genetics took all of their measurements and pictures, the waiting game began. After a few weeks we were called in to have a meeting with the genetics team. They broke the news to us that our daughter had Pallister Killian syndrome. Saliyah spent the first two months of her life in the Nicu. Due to the fact that she still wasn’t eating from the bottle, we opted to have a gastrostomy tube inserted in her stomach so she could come home and get all the nutrition that she needed. Saliyah was discharged around the middle of November. She did very well when she came home. In April of 2013 she was hospitalized again to have her fisula surgically repaired. She had no other major physical problems. She has had many hospital stays for several different reasons.
Saliyah is now 17 months and doing very well. She doesn’t crawl or walk yet but we can tell that she definitely wants too. She doesn’t have the ability to form words yet like mama or dada, but she does communicate with various sounds and coos. She has some moderate to severe hearing loss which she wears hearing aids to help her with. She receives physical and occupational therapy to help with her development. She is delayed in some developmental areas, but she continues to make good progress at her own pace. Saliyah has been an inspiration to our family. She is the definition of a true fighter. We know that we are extremely blessed that Saliyah is doing so well. We are well aware that things could so much worse, and are truly happy. We know that there will be many challenges and bumps in the road along the way, but with the support we receive from our families and lots of prayer, it’s nothing that we can’t handle. Our little angel has two extra chromosomes and that makes her twice as adorable, twice as lovable and twice as special. We wouldn’t trade our baby for the world!!
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