View from inside: When multiple sulfatase deficiency changes everything about how you live and becomes your life

Abstract

My first child Dylan was born in October 2012, it was an incredible feeling to finally be a Dad. I recall telling a friend it felt like I was walking on clouds. I promised myself and my son that I would try to be the best Dad in the world. A few days after the birth my wife Michelle and I took him home feeling like the world was at our feet. The first 18 months of Dylan's life was pure bliss. During this period, we had dreams for the future and aspirations for him and for us as a family just like any other parents would have. This was before we started to raise any real development questions. Dylan was an incredibly happy baby, he was always smiling, he slept well, fed well, was easily winded and he had no issues with reflux. After 8 weeks of age he slept through the night continually. What more could you want as a new parent! Dylan was born 11 days early after admission on the day of a routine visit to the maternity hospital. At that visit Michelle insisted that she wanted a scan carried out. She was concerned that her "baby bump" was much smaller than many others that were at the same stage of pregnancy. This was despite the fact that she knew that the growth of the fetus was within the normal range. Upon being scanned, they quickly realized that there was little or no fluid around the placenta. Michelle was questioned a lot about "when her waters broke." We are sure her waters did not break in any episode and a point to note is that she showered rather than have baths, so we did not miss it! We believe the fluid diminished over time. When there is a low level of amniotic fluid during pregnancy it is referred to as oligohydramnios. Dylan was delivered by emergency C-section due to unreassuring CTG. His Apgar score was 9-9-9 and he weighed 3.12 kg.