I think pregnant women do a lot of daydreaming. I know I did. I wondered over what my new baby would look like. Would he look like me or his daddy? What color would his eyes and his hair be? I imagined his personality. Would he be funny and smart? Easygoing or high strung? I have to confess, during my early pregnancy, I had really hoped for a girl. I pictured a little princess who I would adorn in pink tutus and ribbons and take to ballet class. But when I found out the baby would be a boy, I wasn't too disappointed. My husband and son had really hoped for another boy and they were very excited.
So what happens when you discover something that throws a kink into all of your baby plans and changes all of those daydreams?
It started for me one day at work when I was about 21 weeks pregnant. I had been feeling a little sicker than normal all morning, when I began to feel contractions. I had some pre-term labor in my first pregnancy, so I was really worried about it and I left work early to go get checked out. My doctor was also worried and put me on bed rest while ordering a bunch of tests. One of those test was for my regular 20 week obstetric ultrasound.
I went and had the ultrasound done and as far as I knew everything had gone just fine. At my next doctor's appointment, I even asked the doctor if the baby had looked healthy in the ultrasound. "He looks good" the doctor told me, but he said he was still worried about the contractions and he wanted me to go see a perinatologist (a specialist in high risk pregnancies) down in Phoenix. Phoenix is three hours away from where we live, so my husband and I decided to take our son with us, stay at my mom's house down there for a few days, and make a little mini-vacation out of it.
A week later, down in Phoenix, my husband and I walked hand in hand into the perinatologist's office. The medical tech came and got us from the waiting room and walked us into a dark ultrasound room with large monitors on the wall. Surprised, I asked "oh you need to do an ultrasound of my cervix?". "Well actually I need to do a full ultrasound of the baby." the tech told us. I thought it was a little weird because I had just had a full ultrasound only a week ago. But I figured that maybe the perinatologist was really detailed and wanted his own ultrasound done for his records.
The tech was taking forever. I watched the clock and she spent over an hour scanning my belly. At one point, she kept poking and pushing at one particular spot on my belly with the scanner for more than 15 minutes. She even had me move into different positions. "What are you trying to look at?" I asked her. "Oh, I'm trying to get a better picture of the baby's right hand.", she said, "he has tucked in behind his head and I can't get a good look at it." I started to feel a slow sense of dread. Why was she putting so much time and effort into this ultrasound? Didn't they already have one in their records?
The tech finally stopped scanning my belly and told me she needed to do a vaginal ultrasound. She left the room for a moment so I could undress from the waist down. When she left, I turned to my husband and told him "I think something is wrong with the baby.". He shook his head and gave me a look of exasperated disbelief. "No, of course not. Our doctor would have said something about it already." He must be right, I thought, we would have heard something about it by now. I am just being paranoid.
The tech came back in and started with the vaginal ultrasound. As many women out there know, vaginal ultrasounds are not comfortable. They push a scanner that is shaped like a very large rod up into your most private spot. This is what the tech was doing to me when the door to the room flew open and a strange man came rushing in. Startled and embarrassed, as all of my junk was hanging out and facing the door, I jumped up in alarm. The man quickly introduced himself as the perinatiologist and told me to lay back down and relax.
"Me and several of the other doctors were in the other room watching the ultrasound on our monitors." he says "And we are seeing some problems with the baby." Let me just say that this is not something you want to hear come out of a doctor's mouth. My heart dropped and I was filled with something like terror at what he would say next. I reached over to my husband and gripped his hand, squeezing it so hard my knuckles turned white. I asked the perinatologist "can I put my clothes back on and sit up before we talk about this?" "No," he told me, "We still need to finish the ultrasound so go ahead and lay back while we talk."
He started to pull up fuzzy black and white pictures of my baby one by one, describing the limb deformities that they had seen. First the baby's hand, then his right femur, then both of his feet. Every time he pulled up a new picture to talk about a different problem, I would think 'oh God, there's more?'. There should be some sort of divine natural limit to how many things are wrong with a baby. Maybe one or two things, but that's it. That's all a parent or a child should ever have to face.
My husband was pale and his eyes were numb. His face looked like stone. I started sobbing, crying so hard I was almost hysterical. I managed to squeak out that my father had "lobster-claw" syndrome in a high pitched broken voice . In contrast, the perinatologist seemed almost excited to be diagnosing a fetus with such a rare condition as ectrodactyly. He talked and talked about it, asking us endless questions about my family's medical history, while we just sat there in stunned silence. Then he asked us if we had any questions for him, but at that point I couldn't even think or speak anymore. All I could do was cry. "I'm sorry to have to be the one to give you this news. That you had to find this out from a stranger." he said before he left the room. Yeah mister, me too.
After the perinatologist left, I got dressed slowly, my sobs ringing out in the empty room. My husband stood in front of the monitors, looking up at all of those still little pictures of the baby. The gray light shined on his face and his expression was unreadable. We slowly drove back to my mom's house, the car unnaturally quiet. "I just want to go home." my husband told me as we pulled into the driveway and I agreed. So we packed our things right away and drove the three hour trip back home in a hurry, completely shell-shocked.
That is how I first heard the news that my baby would be severely physically handicapped. Out of the blue, half naked on a cold ultrasound table, a hundred miles away from home, and from a complete stranger.
Friends and family asked me "why didn't your doctor say something to you about it before you saw the perinatologist?" I have to admit that for a few weeks I was furious with my OB doctor. A little warning would have been nice. At my next appointment with him, he asked me "how did the visit with the perinatologist go?" "It was a fucking nightmare. That's how it went." I told him. Then I explained to him what the perinatologist had said about the baby's limb deformities. He looked totally surprised as he began flipping through his chart, scanning the notes in a rush. He acted just as shocked by the news as we were. I'm sorry, but I don't believe that he didn't know about it before then. He is a sharp guy and a very thorough experienced doctor. He must have wrote about it in his notes or said something to the perinatologist. Otherwise, how would the perinatologist have even known to look for it in the first place?
However, I can understand why he didn't say something about it to us first. As a nurse, I know that, in general, the medical community loathes giving bad news. We see the cat scan that says our patient is filled with cancer before the doctor does. We know that a patient is too sick to leave the hospital alive before that patient's family does. But it's not our job to say anything. The doctor or the specialist will have to tell them, because we definitely don't want to be the one to deliver that message. It's someone elses job, not ours Maybe my doctor just didn't have the heart to tell us about our baby. It was probably easier not to say anything and let the perinatologist do it.
Well, that's it. That's the story about how we learned to expect the unexpected. Coping with it, however, was a completely different matter. Something I will have to tell about in a different post.
1 comments:
I know how hard it is, I do quandoo ultrasson 13 weeks, what I wanted was to know the sex of the baby, and that day and saw a girl. I was alone in the room with the doctor, my husband had been in the car, I think he actually was afraid that this news could come.
The doctor did ultrasound, and I realized that the little hand was experiencing was different when he finished: I asked doctor when're gonna get to see her little hand? he looked at me startled and asked why?, I said there were cases and malformations in the family, and that his father also had. He said he was not going to tell you, I would go to your doctor, but since you asked, yes she is, can not see well because uch is still very small, but it's impossible to see what is not normal. The world seems to end up in the moment. The worst of it all was to break the news to my husband, he soreu much, the family suffered a lot, every time we were going to do ultrasound, was water torture, suffering, and we spend all this po during pregnancy and still not ready for delivery.
But all this pain passes, and love for only increases every day, my daughter is everything I love in the world, and will do anything for her not to go through that, let's resources behind so that future generations do not have ectrodactyly . Forces for all moms, no one can understand the heartbreak of a mother, and the best thing people can do is not say anything, because they speak every thing that hurts a lot, does not understand what we are feeling, and I'm sure all moms have thought thus: If I could give my hands to my baby ...
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