I just spent several days in the hospital after my large kidney stone - remember the one from my recent pregnancy? - decided to rear its ugly head. I was sitting in my beginning crochet class on my birthday (gift from my awesome husband) when the familiar pain about took my breath away. I thought it would eventually recede back into the kidney like it did before and was determined to outlast it. I threw in the towel 12 hours later and headed to the ER. Kidney stones hurt!
After receiving pain meds (ahhhhhhh) and a stent to allow for good urine flow, I was sent home. The next day, I awoke with a fever which kept climbing until it was above the "call the office if you develop a fever greater than 101F". Mine was 102.7. They sent me to the ER, where we waited for 3 1/2 hours before being called back to see a doctor. After giving me more pain meds (ahhhhh) and fluids, they decided to admit me.
In 2008, I had similar kidney stone experience. I had a lithotripsy (shock to the kidney to break up the stone), received a terribly uncomfortable stent, and (long story short) ended up in the hospital with candida sepsis and almost died.
The morning after my recent admission, in walks my urologist who cared for me during my last debacle (much of which was the fault of one of his partners). He walked in and said, "I thought it was you! How many kids do you have, now?"
And then I remembered: He was just in awe of the fact that we had 5 kids at the time. He talked about it every time he saw me. He could not imagine how we afforded all those kids and how we handled them. He asked tons of questions about it.
When I told him we now have seven, he was, of course, incredulous. He asked the same questions all over again and I laughed. I responded like I always did.
But it made me think.
It's obvious he doesn't know many moms of large families. The few times he's seen me, I've been at my worst, in a medical crisis. I looked awful...exhausted, stressed, sick. I'm sure any other moms of many he sees in his medical practice look the same because of when he sees them.
What if he decides from those encounters that moms of many have a poor quality of life and must suffer a great deal? They are exhausted, stressed, and sick. What if, when he saw my husband who looked stressed, as well, he deduced that I'm a burden to my family? I'm now someone who's in and out of the hospital. He's never seen me laugh with my kids, or hang out with my friends, or date my husband, or enjoy my job, or any of the things that make my life great!
Maybe it's a bit far fetched (or maybe not...he was really focused on our large family:), but I'm afraid that's what happens when doctors see children and adults with Down syndrome. They see these folks in a medical crisis and make the leap. They decide that theirs is a life of poor quality. They see the number of hospitalizations or the severity of an illness and decide that patient has a miserable life, as if a medical record can ever adequately describe the life of a person. They never see the patient laughing, loving, living. They never see the in between times. They only see the stress, the sickness, the fear.
Often they assume the negatives must also be true of every other person affected with Ds. Just like my doctor will never see the thousands of healthy moms of many, other specialists will never see the thousands of healthy people with Ds.
So when people with a prenatal Down syndrome diagnosis ask them about quality of life for those with Ds, they answer with their experience, and their opinions formed from their experience. And that's just not accurate.
And it's not good enough.
Thankfully, it's no longer all they have to go on. Lettercase now offers a brochure to medical professionals called Delivering a Down Syndrome Diagnosis. I am told it's excellent and of the highest quality and most accurate information. They plan to deliver them to 10,000 perinatologists, obstetricians, and genetic counselors this year. That will only be a fraction of the number needed to be distributed. It is incredibly expensive to publish and distribute and they could use our help. Please visit the site and consider making a donation or, at least, purchasing a brochure and delivering it to your healthcare professional. If even one woman chose to continue her pregnancy because of it, wouldn't it be worth the cost?