Wednesday, January 27, 2010

The Story of Emily, Chapter 7: From Bad to Worse

The Story of Emily

Chapter 7: From Bad to Worse

The thirty-second week of the pregnancy began simple enough. On Monday I started on my twice weekly appointments for a non-stress test (NST) at my regular doctor office. I went into a basic room with an exam bed and a machine on a cart. After I laid down on the bed (in a semi-reclined position) a nurse strapped two stretchy belts around my middle. One was to measure for contractions, the other was to pick up the baby’s heart rate. I was handed a devise that looked similar to a Jeopardy! buzzer. The idea was for me to click the button on the buzzer anytime I felt the baby move. The staff wanted to see a minimum twenty minutes of active baby and changes in her heart rate. If Emily was uncooperative after twenty minutes, they would bring me a sugary drink. The first non-stress test was amusing, a novelty. After that they began to get tedious. It was boring in the room with nothing to do but read a magazine, but that was hard to do one handed while half-way laying down. If only MP3 players would have been around! They were also frustrating when Emily didn’t move enough in the first twenty minutes. Then, the test had to start all over. This was especially exasperating when it would make me late for work.

I had only been working at the school for seven months and I was already having to take lots of time off. I always tried to schedule my appointments in the morning before I had to be at work by 12:30. However, I also wanted Mark to be there for the more important appointments, specifically the ultrasounds. He sometimes didn’t get home until 10 AM, so there was only a two hour window to schedule things. Every so often I wasn’t able to get an appointment at an optimal time. Starting in the 32nd week the appointments began to pile up. There were the NSTs twice a week, an ultrasound every three weeks and once a week I had to go in for a ‘normal’ check-up, plus a few others thrown in to the mix. If I had known back in June that I would be at the doctor office or the hospital 3-4 times a week, I wouldn’t have taken time off the week my parents, sister and brother-in-law visited. The enormity of what we were going through became much more stressful during this period.

One of the few appointments Mark did not get to make was the return to the genetic counselor for the results of our amniocentesis and FISH test. I know he wanted to be there, but scheduling conflicts got in the way. We weren’t really worried about what the test results would reveal. After all, we had already decided our path. We knew something was wrong with our baby’s brain. We knew she might not ever sit-up, walk or talk. We knew that she might be mentally and/or physically handicapped. Knowing this, we were already making arrangements for her care during the day. I had put her name down on the waiting list to get into the school where I worked. There was no better place for her to be than a school that was dedicated to kids with special needs and a place where I would always be nearby. We were preparing ourselves for any problems she may have. We already loved Emily and the results of some tests were not going to change that.

I went into the genetic counselor’s office fully expecting to get some answers. I figured that out of two genetic tests we would get a name for whatever had caused our daughter to have hydrocephalus. The counselor began by telling me that the FISH results were negative. At the time FISH only tested for Trisomy 13 (Patau syndrome), Trisomy 18 (Edwards syndrome) and Trisomy 21 (Down syndrome). This was the good news; the complications from any of those syndromes could be severe. The bad news was the amniocentesis results were inconclusive. Because we had waited so long to have the test done, the cells that they collected were old and they didn’t grow in the culture. There would be no concrete answers given that day. Trying not to sound too disappointed, I remarked, “At least we know she doesn’t have Trisomy 13, 18 or 21.” That’s when I heard the words that would forever change my life—again. She replied, “Yes, but we don’t know if she has something that is not compatible with life.” Stupidly, I had to ask her to clarify. What did she mean, ‘not compatible with life’? She went on to explain that sometimes a ‘fetus’ has a disorder that won’t allow it to survive outside the womb. Its existence is explicitly connected to its mother’s life. Once the baby is born and that connection is broken, then the inevitable will happen.

Well. Hell.

I left the office feeling numb. There were no tears and pain of heartbreak this time. I had been through the emotional ringer so many times in the past ten weeks. I didn’t have anything left to give. I’d had my hopes dashed too many times. Each time we went for an ultrasound we hoped the ventricles hadn’t gotten bigger. Each time they had. We had hoped the genetic tests would give us answers. They didn’t. All the way home, I just kept hearing the words not compatible with life, not compatible with life over and over in my head. Then the one question I had been trying to avoid snuck through:

Why hadn’t anyone mentioned to us that our sweet, sweet baby could die?

We had been so happy, so excited to find out we were having a baby. We had been pleased to find out we were having a girl. When we learned she had something wrong, we dealt with it. For the past two and a half months every discussion we had about Emily was how we would be her parents, for better or worse. We would get through whatever we needed to get through in order to give her the best life possible. But that was the point. Life. How were we going to deal with the possibility she might not make it?

After Mark got home we talked about the results of the FISH test and the amniocentesis. For the first bit we felt like the last teensy shred of hope had been sucked out of our lives. We faced our new greatest fear and discussed funeral plans. There was a small funeral home in our little town, maybe they could direct the arrangements. My parents were planning on flying in for Emily’s shunt operation. Maybe I should tell them not to make reservations with the airline until after she was born. I would need them sooner if she didn’t make it. This kind of talk dragged on for awhile.

Then we were going over what each and every doctor, nurse, sonographer and counselor had said to us. We realized that not once had we been given a straight answer for why Emily’s ventricles were enlarged. Percentage-wise, hydrocephalus was the most likely culprit; enough that it was her diagnosis. But that still left a small percent that it could be something else. What if that something else meant that the doctors had been wrong about all of it? What if there was really nothing different about our baby? Doctors have been wrong before. Programs on television were all the time running stories of cases where there were medical mistakes. What if our daughter proved to be one of those cases? Suddenly, we had hope to cling to again.

Even though Mark and I had some hope again, I was still thinking of the worst ‘what if’. I like to know what is going to happen. And if I don’t know exactly, I like to be prepared for the different scenarios. Every day I had to pass by the funeral home on the way to work. Just seeing the place and knowing we might have to use it filled me with despair. Then I would get to work and see all these kids who had gone through so much and I would be uplifted again. That is until I had to make the drive home. When I would pass the funeral home at the end of the day, I would think, “little white casket” and be down all over again. I would get to our house, get on the computer and read stories of moms that had lost their babies. I needed to know how to think and act if the worst happened. I needed to know what I was supposed to do, how to go on. I cried for those moms and babies and I cried for myself. I never shared those thoughts or actions with anyone. I was too ashamed and I thought it would make me look morbid. I tried so hard during the day and when I was with Mark to only project hope.

Chapter 8: A Miracle


  1. Hi, I'm totally sympathetic with your story - it's one hell of a rollercoaster ride. My little girl had/has ventriculomegaly, and they got up to 18mm. I prepared for the worst but, fortunately for me, she didn't have any handicaps and is showing no delays.

    It all seems to so long ago now, but I try keep an eye out for people going through this. I can't believe now that it was like that.

    All the best

  2. You can't leave me hanging. I'm anxious to hear the good news. I had no idea your journey was such a bumpy one. ((HUGS))


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