Babies, Genetic Testing, and things I don't really want to talk about
A little while ago, I read an article about the parents in Oregon who were just awarded $2.9 million in a “wrongful birth” suit. I don’t want to go into details about how wrong I think this is. Instead, I would like to share my experience with misdiagnosis and what it did to me.
I found out I was pregnant with my daughter two weeks after moving to our current home. However, it was not all joy and bliss right off the bat. My doctor had actually told me not to try to have a baby because I had been having a lot of menstrual problems at the time (as in I hadn’t had a period for months before becoming pregnant and had been having severe abdominal pain that were unexplained.) I had to go to the doctor to take a pregnancy test because every home test I took came back as pretty much inconclusive. It looked like the line was there but was so faint that we weren’t sure. Well, the test at the doctor’s office baffled them, and I was sent to the hospital for an ultrasound to rule out an ectopic pregnancy. Once that was ruled out, my doctor told me that I should find an ob/gyn closer to where we now lived. Because of moving, my doctor’s office was now over 45 minutes away. Since we had just moved to a new town, and I knew no one, I just went with the place that was the closest. That turned out to be a pretty big mistake on my part.
The ob/gyn who saw me was not the one I requested, and from the start I did not like him. I guess I kinda have a problem with someone bigger than me telling me that I should lose 20 pounds while I am pregnant. Apparently, he never read my medical records where information about my eating disorder was kept and that he was not taking the best approach to making me feel good about myself. Fact is that I didn’t gain hardly any weight while I was pregnant with my daughter and came out of the hospital after delivery in pre-pregnancy clothing. However, I am getting sidetracked…
During my first visit at the ob/gyn, they told me they couldn’t hear the baby’s heartbeat and needed to do an ultrasound. So they whipped out this thing and shoved it some place uncomfortable (and I don’t mean the back of a Volkswagon). I had been pregnant once before and had never had an ultrasound that way, and it hurt like heck. They finally found the baby’s heartbeat and sent me on my merry way. This was all very early on in my pregnancy, but the whole experience with the ultrasounds and scares did not give me that sense of joy that I wanted in being pregnant.
I had finally started to relax as I settled into my routine of taking care of my then two-year old and my steady bouts of morning sickness. It wasn’t so bad, until the ob/gyn wanted to do the blood tests that determine if my child had down syndrome, spina bifida, and such. While I don’t have the greatest short-term memory, thanks to my accident, I can remember the day I got the call from the doctor’s office like it was yesterday. I was told that tests came back and that there was something wrong with my baby. I heard the words spina bifida and that my level two ultrasound was being moved up. I started to cry. I called my husband while he was at work sobbing hysterically. It all hurt so much.
We made arrangements the day of the ultrasound for my son to spend the day with my mother-in-law. Originally, I had thought that it would be awesome to have him there to see his new sibling on camera, but considering the circumstances, we figured this would be better. I went into the room for the ultrasound and waited. Then I finally saw her, and she was perfect. She was moving around, and I swear she was giving us a peace sign. The technician said she looked just fine, and for the first time in my whole pregnancy, I felt like I could breathe a sigh of relief, that my baby was healthy, that she would be born, that it would be okay. My husband and I were so elated that we took a trip to Happy Fun Land (Ikea) that day and bought all of her furniture for her nursery.
However, a few weeks later, I had to go back to the ob/gyn for a follow-up. The ob/gyn started talking about my weight again and that we needed to schedule my amniocentesis. I had two WTH moments right there. The first one was because I had just been to my regular doctor for an EKG because I had been overdoing it with the exercising and was told by my doctor not to listen to the ob/gyn about my weight. The second was because I had seen the ultrasound. Hadn’t he? My husband and I declined the amniocentesis to which he treated me like I was some sort of idiot, and I resisted the urge to punch him in his stupid face (since I am a pacifist and all).
Shortly after all of this, I found out from all the wonderful mommies in the new playgroup I had just joined that my ob/gyn’s practice had several malpractice suits against them for various things. I decided that I could not see that man delivering my baby, and I switched obstetricians. I told the new ob/gyn at my first visit that there would be no more tests, no more ultrasounds, no more anything. I was done. I did not even do the regular sugar test. I pricked my finger for two weeks and measured my blood sugar that way instead. They kept me in check with my over-exercising since I was so panicked about gaining weight, that I tended to overdo it. In the end, I got through it, had a beautiful baby and ended up going through some serious therapy with a counselor because of the whole experience.
So what is the point in me telling you all of that? Basically, it is this: the tests are not fool-proof. My daughter has none of the conditions they originally thought she had. And if she would have been born with any handicap, I would love her just the same. For me, the pain I went through was caused by the constant upheaval of not knowing if everything was okay or if I was even going to meet the life inside of me. To be told that something is wrong with my baby was scary stuff and the effects of it were so traumatic that I wasn’t sure I ever wanted to be pregnant again because I didn’t think I could take another emotional roller coaster like that.
Tests are not always accurate. While the parents from the article had a baby with down syndrome that was misdiagnosed and would have terminated the baby had they known, what if in my instance, I would have terminated a healthy baby just because the tests said she had problems. As I know now, my baby girl has none of the problems her tests results said, but what if…
My husband and I are hoping to have another baby in the near future. It took a really long time to come to that point. This time around, there will be no tests or anything. I just want to get pregnant, enjoy the experience, and love the little life that my husband and I create.