My first child Taggart is currently 9 months old and was diagnosed at 2 weeks. He was born on November 16, 2001. When the local doctor overlooking him after he was born noticed is wide bridged nose, a slight fold on the top of his ear, a single crease across one of his palms and smaller genitalia. The physician had suspected downs syndrome and a chromosome test was ordered. Approx. 1 week later, we found out the news that Taggart was 49 xxxxy. My first impression because of the false info we were given was what will I do now? For a moment I did feel a sense of distance with my new born son. I was scared and afraid for him but it didn't take me long to bounce back and realize that this is my baby no matter WHAT. Taggart is in physical and occupational therapy and we have a team also including a pediatrician, clinic nurse as well as a social worker for those days that are hard to cope. We also have a early childhood intervention program that comes into our home every two weeks to work along with Taggart, and they also bring alot of neat toys for us to borrow. I can say we have been fortunate because he is doing quite well. Taggart never did breastfeed so as like some of you other mothers I pumped for almost 6 months. He has been healthy except he has a small heart condition (PDA) Patient Ductus Arteriosus, an opening in the heart that is suppose to close 2-10 days after birth. Taggart's closed somewhat but not all the way. If it wasn't for my husband and I requesting for an echocardiogram we may have not found out until later in his life. We are waiting until the end of September to see if the opening will close itself but if it doesn't he will require surgery where they make an incision through his femoral artery and do what is called cardiac catheterization. They then stick a coil in the opening and let tissue grow around it ultimately closing the gap. Sounds pretty easy, actually, they consider it a minor surgery. Taggart was sitting by 6 months and is beginning to roll now somewhat. He also is an excellent baby never cries just whines occasionally but I feel that is his means of communicating since he doesn't do the babbling that other children do at his age. I started him on food around 4 months and just within the last month he has been doddling and not opening for me so at times I feel as if I am force feeding. Taggart was 6 lbs 15 1/2 oz. at birth and dropped to 6lbs 2 oz. He has been consistent on the charts 25% height, 15% weight, 50% head circumference. I should also mention that he was 2 weeks overdue and it was a double induced labor but finally he arrived. I recently attended a conference in Columbus, Ohio because the info in Canada was so limited it was great to meet others that were dealing with the same issues as we were. The one thing I have learned over the past few months is he is "normal" in our eyes we are treating him like any other child. We may have to run around a little and more do more work, but that it what is going to make a shape the kind of family we are going to be. To be honest as challenging as it may be at times, I wouldn't change it for a minute. Our son is not disabled, retarded, or handicapped for now he is and always will be our boy we named "Taggart.
Story Submitted by: sspilchuk@hotmail.com
