Caitlin & Emalin were born August 15th 2003, 5 weeks premature. With 8 hours of labour and my inability to push, the girls were taken by c-section; Caitlin arriving at 2:56am, weighing 4lbs 12oz and Emalin arriving at 2:58am, weighing 4lbs 2oz. I only had the chance to see the girls for a brief second before they were whisked away. Still in the aftermath of childbirth not much went thru my head except "those can't be my babies! Look how much hair they have". The girls were rushed out of the delivery room and taken to the nursery to be incubated, Chris left with the girls. I was taken to my room shortly afterwards, where Chris was waiting. Something about him just didn't seem right. He told me that the girls had crooked thumbs (he was already told about RTS but didn't want to tell me). The Pediatrician came in almost immediately and announced the girls had a rare syndrome called Rubenstein-Taybi's Syndrome. He described some of the features and said that they would never walk or talk, then left the room with no further information or support. We were left with an emptiness that is indescribable. From that moment we began the emotional roller coaster throughout the following weeks. The girls were taken to Royal Columbian Hospital and had a four week stay in the Special Care Nursery due to their prematurity and inability to stay awake long enough to feed. A battery of ultrasounds and genetic tests were done. The girls each had a hole in their heart, which we were told is quite normal in babies and so far has not caused any problems and should close over time. Emalin has a small cyst on her kidney, which also has not caused any problems. They have wide angulated thumbs and wide toes, with one being angulated. All genetic tests have come back normal. We have been lucky so far that the girls have not suffered any medical complications that come with the syndrome.
Shortly after the doctor told us that our precious angels had RTS I was determined to learn more. I checked myself out of the hospital 7 hours after the girls arrived and rushed home to surf the Internet. I began reading and was relieved to read that the girls WOULD WALK but was mostly shocked that this was all happening to us. How could this happen to us.????? I read and read about all of the medical complication that may happen and thought, "How will we beable to handle TWO babies/children with disabilities?" We just didn't think we could do it. So we started researching our options, mostly adoption. We then spoke to our families and told them about the syndrome and that we were considering putting the girls up for adoption. They were very supportive and told us that they would support any decision we made; it was comforting in this time of loneliness. We just didn't know how we could raise two children with disabilities, as much as we loved these little girls and just couldn't see how we could give them the care they needed. We were scared of the unknown and had to think of the girl's best interest. Over the next few weeks, we spent a lot of time crying, visiting the hospital and talking with other RTS families. We made the decision, with a lot of support from our family and other RTS families that "We were the ones who could best care for these precious girls". Without all of the love and support we received especially from the RTS support network we would have given the girls up and would not have ventured onto this wonderful journey of life with OUR GIRLS.
Of all days, September 11, 2003, the girls came home. Unfortunately, many families lost their loved ones on this day and we will continue to remember all of these families. We will also remember this day as the day our family began. Two angels came into our lives. We have not once regretted our decision and feel lucky to have TWO special little girls who have brought more joy to our lives than we could have ever imagined. When we made the decision to bring the girls home I made a promise to myself to NOT feel sorry for the girls or myself. I have on the most part kept this promise. I do have the occasional moment where I still can't believe they have RTS but it is a wonderful part of who they are and who they will become in the years to come and they truly were a terrific gift. They are the happiest babies in the world; you just can't wipe that smile off their face.