What is the difference between a doctor and a secretary?
That’s not a joke.
This week there was no difference. Both asked after my daughter. Both offered no new information whatsoever. In fact, as far as services go, the secretary at least provided me with the form I requested.
On Monday, we met with a neurological ophthalmologist. He dilated May’s eyes, determined them structurally sound and revealed that the nerves connecting them to her visual cortex were severely underdeveloped. Then, he told me that May’s sight was fine but that she has no ability to understand, identify or remember anything she sees. He spoke in the same tone as a customer service rep who has just been asked for the 1000th time how to power up a cable box.
“Is there anything we can do to help her?” I pleaded.
“Nothing that you wouldn’t do for a normal baby.” And, that was that. Nothing. I find it incredible that May has a multitude of therapists for her physical needs and zero for her cognitive. No one has any advice about how to help her in the most essential way she needs.
While I fought back tears with my virtually blind daughter cooing on my lap, the doctor continued briskly, “So, shall we make a follow-up appointment in 9-12 months?”
On Friday, my husband took May to the Genetics Clinic at the same hospital. Six-months ago they tested May’s blood to investigate whether there were any genetic abnormalities that led to her brain damage. As I already endured one traumatic appointment this week, my husband took off work to learn whether our combined DNA resulted in May’s injury – an implication that would not just reflect on May, but any possibility of future children for us.
Here is how the meeting went. The doctor forced my husband to tell the tale, yet again, of the trauma of the past year, from pregnancy onwards. (Isn’t this what medical notes are for?) Then, the doctor drew our family tree and when it came to my husband’s father, who passed away, he put a big cross through the box.
Doctors are not unfeeling, but they are detached. I would chalk it up to professionalism, except that they can be so unprofessional.
Doctors severely underestimate how much strength it takes to wake up in the morning and haul your baby across town for an appointment that will never provide you with any good news. Often at these appointments, like on Monday, I feel like the doctors think we are wasting their time.
But, what of ours? What of the nights I spent anxiously awake this week wondering if my DNA was the cause of my daughter’s injury? Or, the other nights, when I lost sleep wondering if this doctor was going to advise against us ever having another child?
At no point during the meeting did the doctor tell my husband the results of the genetic testing. He did, however, draw a lovely tree and symbolically kill off my husband’s father.
The next time I want something done, I’ll go back to the secretary.
Hi
I thought you might be interested in a book called cortical visual impairment by Christine Roman Lantzy. It is has lots of practical ideas. You can get it from Amazon for £34. Good luck and I hope it helps. Enjoy reading your blog. best wishes Sue
Thank you, Sue! I will definitely check it out!