When I was eighteen weeks pregnant with our fifth child, a routine ultrasound revealed that she had a major heart defect. Additionally, we were told that it was very possible that she would have Down syndrome, but we chose not to have any of the tests which might have confirmed this diagnosis. We were concerned only with fixing her heart; we decided we would wait until her birth to see whether or not she had Trisomy 21. All of our doctors were always very kind and supportive throughout my pregnancy, which, apart from regular visits to the perinatalogist and cardiologist, proceeded rather uneventfully. On August 19, 2004, we joyfully celebrated our dear little Rose's entrance into this world. The diagnosis of Down syndrome was confirmed at her birth. She spent the first several weeks in and out of hospitals, and by the time she was ten days old, she was in heart failure. She slept almost 24 hours a day and had no energy either to eat or to cry. At three weeks of age, weighing 6 1/2 pounds, she underwent open-heart surgery. She recovered beautifully, suffering no complications. In addition to her heart defect, Rose also suffered from kidney and bladder problems which necessitated her being on daily antibiotics for the first fifteen months of her life. When she 11 months old, she underwent bladder surgery, which corrected her condition.
Within the first 17 months of her life, Rose endured five surgeries, but one would never guess it from looking at her. She is so robust and full of life. Ironically, despite all of her health problems, Rose has been the most pleasant and easy-going of all my children as babies. She is absolutely adored by her brothers and sisters, and she knows it! I often think about the richness that she has brought into all of our lives. Just by simply being a part of our family, she has helped develop such wonderful qualities in my other children.
From the time that we found out about Rose, we always believed she was perfect in her supposed "imperfection." Still, sometimes it takes a child's words to really put things in their proper perspective. One day, before she was born, I was sharing with my other children how, statistically speaking, only 1 in 5,000 children are born with Rose's heart defect. Wide-eyed with wonder, my younger son responded, "Wow, then she must be really special!" Yes, she certainly is.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.