Diagnosis Stories – Claire and Xavier

We received a high chance at 13 weeks, the doctor made an appointment for us to see the paediatrician to discuss what life will be like with a child with Down syndrome. Before the appointment he rang me and told me to not be alone, to bring someone and be prepared because he was going to be honest…even if that meant there would be things I didn’t want to hear. 

I turned up expecting the doctor to pressure us into termination but he was very unbiased. He told me the statistics. 40 percent have heart defects, so many have autism, thyroid etc etc. He then also showed me some photos that were on his desk of patients of his that have Down syndrome. He then told me “they can also have great, productive lives” he then also told me to stay away from info on the net and gave me links to accurate up to date information. He also printed out some info regarding tests that would be done on my baby and at what age. He answered all my questions. I remember when I left I looked at my husband and said “you know what, none of that scares me off having this baby”, still, we went through with an amniocentesis because we were also given a high chance for raising 13 and 18.
The process from there to diagnosis was about 3 weeks….longest three weeks of my life. I got a phone call saying to come in to the Dr. I knew straight away my baby had one of the conditions because they previously said if it was negative they would tell me via phone.
The doctor just said “you knew there was a high chance of your baby having trisomy 21, the results confirm that your baby does have trisomy 21, down syndrome”. I sat in silence, not even able to speak. I then asked “I know it’s not important but is it a boy or a girl” he replied “it makes it more real, your precious baby, is a boy” I looked at my husband and that’s when I cried. We so badly wanted a boy. The doctor kept quiet I think to allow me to process the news. I then said “what do i do now? What do I do next” and his response still gets me every time “just go home and be with people you love”.

I always felt my doctor had my back and always felt like he supported by decision either way. He asked if I wanted to terminate once. Once I said no, he left it at that.

I once had a trip to emergency after a small complication and had a random doctor. He asked me if I had had an amniocentesis and what the results where. After to told him down syndrome he said “and you decided to keep?? Why??” I told him “my husband and I decided that’s what we wanted to do after careful thought and consideration” his response “I’m not sure that was the right decision, you obviously had an amniocentesis because you would terminate if ds was detected. Now your keeping the baby because you feel guilty” my husband stepped in at this point and said “no, the amnio gave us the chance to process the news before the baby comes along and helps us prepare”

Claire -mama to Xavier.

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