I am 29 years old and I'm flat on my back on an operating table. My unborn son is in fetal distress and I'm terrified. I'm about to have my second c-section. I tell the anesthesiologist that all I want to hear after my son is born is that he is okay. The only thing is, after he is born they don't say anything. They whisk him away to the corner of the room...and they don't tell me anything. After a period of time, I ask my husband to leave my side and go check on him. When he comes back, instead of reassuring me, all he can say is "ummm...they are working on him."
Several minutes later the pediatrician on call comes over to the operating table and kneels down so that his face is level with my own. He says quietly, "We believe your son has a chromosomal abnormality...we think he may have Down syndrome."
I feel as if I am falling through a long black tunnel. There is no ground underneath me. I am shocked. I feel extremely vulnerable. I don't know what to feel. I don't know what this means.
A little later he tells me that my son has a heart defect and that he will need to go to Children's Hospital right away. He is whisked by me on the way out of the operating room. My first thought as I see my son for the first time is, "yes, he looks like he has Down syndrome." I don't know what to think. I am still in shock and I feel detached from him. Even though I know he just came from my body, he doesn't feel like mine.
A week or two later, he is still in the hospital. By then he has also been diagnosed with an intestinal disorder and has already had a surgery or two. They send a geneticist to come and talk with me. I don't know why...I've just had a tubal ligation as we have decided two c-sections are enough. She takes me to a little conference room.
My son is so tiny, I feel so vulnerable and I still don't know how to think about him or his disability. This feels like "tragedy." The geneticist is strong, sure of herself and very articulate. You could even call her strident. Something she says stands out to me, "Your son will not live with you the rest of your life." Finally I know how to think...my son will be able.
Her comment set the stage for how we would raise him.
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5 comments:
Wow - I am just appalled by this experience, though not surprised. It never ceases to amaze me how impersonal and cold doctors can be, especially when a little human sympathy or empathy would go a long way.
Your son is lucky to have you for a mom, because you refuse to treat him like anything other than who he is - himself.
I have to go cry now...!
I think these kind of comments produce tons of post traumatic stress !!!! But also can give us tons of determination. Anne
Wonderfully written...My youngest, Rylan, was in Intensive Care (NICU) for his first day of life, and I never did find out why- I never even got to see him until a day later. It was the scariest time of my life- watching my baby with a recessutation bag over his face, not knowing what the heck is going on.
Now you know what you have to do... post baby pictures! :) Yay baby pictures!!!
Geez Jodi. So long ago and yet still so clear in your mind. I'm glad the specialist finally put things straight for you. It sounds so traumatic an experience! I remember waiting the 10 minutes while being stitched up for the neonatologist to come back and tell me whether Moo was alive. It really was the longest 10 minutes of my life.
You have done a fabulous job with both kids :-)
Geesh- hospitals and Dr's (no offense to those who are). I had a homebirth and our midwife suspected but was so loving and wonderful about it, then and in the weeks after. She set up a Dr's app't to do the blood work for the definitive dx and came with us! She chose our baby for her ad pix- I have to say our baby was the cutest ever. Thankfully she didn't need heart surgery until she was 4. Glad to meet you - came by way of casdok and the disability blog carnival! Please come and visit!
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