Faces of Loss, Faces of Hope

Danielle

Mom to Zachary Jonathan

Left on October 28th, 2010 at 21 weeks, 6 days gestation

Maryland

On Friday, October 8th, My boyfriend Jon and I went for our first ultrasound appointment. We had just gone to my regular OB for the second pre-natal visit. We listened to our baby’s heartbeat; it was perfectly healthy. Because I found out very late that I was pregnant, this was only the beginning for us. I had been on birth control and did not expect to become pregnant, so I had not been taking vitamins or trying to get myself into “baby-making” shape. But of course once I found out I began right away and got the first appointment available to make sure everything was going well.

Because my second appointment was scheduled for when I was 18 weeks, my doctor referred me to another office to have my first ultrasound. She said if we went right away we might be able to get an appointment for that day. We were so excited! This would be the first time we saw our baby, and I was bouncing up and down in anticipation. We got to the other office at about 11, and they told us we could come back at 12:45. We went out to lunch and then back to the office. Once we were in the room, I laid on the table and the tech put the cold goo on my belly. I was actually so excited, I really didn’t care. And then on the screen on the wall, we saw our son for the first time. She just moved the device back and forth a few times so we could see him, and asked if we wanted to know the sex. We both had decided before hand that we did, and she told us it was a boy. We had been thinking it was a girl (my mothering intuition was off), so looked at each other and he just held my hand and said, “I guess we need to think of other names!” After a few more minutes of awe-inspiring pictures, the tech told me she was having trouble seeing his head because it was so far down. She asked me to turn on my side and face her, but that didn’t make any difference. She then asked me to undress from the waist down so she could try an internal sonogram. I did as I was asked and a few minutes later she came back in and tried again. She still was having trouble. Then she got up, grabbed all of the pictures, told us she’d be right back and left the room. Jon and I began talking about name possibilities for our future son. When the woman came back she told us our baby’s head didn’t look right, and that the radiologist was looking at the pictures and trying to get a hold of my OB. She told us not to worry and then left the room again. I immediately started crying. What was wrong with my baby? His heart rate was perfect and all of his measurements were right where they should be. Jon got up and hugged me and told me not to worry until they figured out what was wrong. I couldn’t help but worry, I was so scared. I had no idea the worst had yet to come.

The woman returned and said that the radiologist had gotten a hold of my OB, and that she wanted us to come back to her office right away. That sent the worst chill down my spine. The offices were only right down the street, so in about 3 minutes we arrived at my OB office. She was there waiting for us.  I knew that wasn’t a good sign. She told us to come back, and we just stood inside the doorway and talked. She asked if they had told us what was going on and we said no, we had no idea. She said, “I don’t want you to worry, but the radiologist sees that there may be a birth defect to do with the baby’s head. We contacted a high-risk specialist and they have an opening, they want you to come right now.”  So, off we went, back down the street to the next office.

Once we got to the high-risk office, we waited only about 5 minutes before they took us back. The technician there was a lot nicer than the previous one had been, and their machine was a lot nicer too. We watched our beautiful boy dance around on the big flat screen on the wall. She pointed everything out to us, and our baby put his hands and feet right against the camera so there were very clear pictures. My heart was singing, I had forgotten anything could be wrong. The tech sounded so reassuring. But then she also said she couldn’t see his head. She took the pictures and left the room, and about 2 minutes later the doctor came in with a woman he introduced as a genetic counselor. As soon as he said she was a counselor, I knew something was wrong. I was thinking along the lines of a mental disorder. He asked if anyone had told us anything and we said no, we had no idea what was going on.  He told me I wasn’t going to remember much from that day, and that scared me because I thought something was so wrong they were going to have to perform surgery on me. He then sat beside me and did his own sonogram to see for himself. He showed us on the screen that our baby’s skull had not fully developed, and therefore his brain wasn’t developing. There would be no way he would live. He said it was called Anencephaly. With every word that came out of his mouth I could actually feel my heart breaking. He told us we had the choice of terminating the pregnancy or carrying to term, but even if we carried to term nothing would change. Our baby would not survive. He told us to take the weekend to think about it and they would call Monday to see what we wanted to do.

We spent the weekend mostly just holding each other and cry. Both of us had just gotten used to the idea we were going to be parents, and now this. When the genetic counselor called on Monday, we told her we had decided to terminate the pregnancy. I could not imagine carrying my first child full term knowing he would most likely be still-born, or die within hours of his birth. My emotional health was in no shape to do that. I would not be ok feeling my son moving around knowing he wasn’t going to live.  I had just begun to feel him start moving, and it broke my heart to have to find all this out. The woman gave us a number for a special hospital because the doctor wanted the people to know what they were doing.

The genetic counselor told me she called and that they had an appointment for that coming Friday, the 15th. She explained that it would be a 2 day procedure and that Friday I would go in and they would give me something called Laminarea to soften and dilate my cervix to make it easier for the removal the next day. When I called, they were closed, so I tried again the next day. The woman I talked to asked when I wanted to make my appointment, and I told her the soonest Friday they had. Jon is in school 4 days a week and he really can’t miss days, so Friday is the only day he could be with me. She told me that the 15th was full, and the next available appointment was for the 22nd. I had a big family dinner that day, but I said I’d do it just because I didn’t want to keep dragging it out. But the date I was originally given put me too far along to go there; they only take women up to 20 weeks and I would be 20 weeks by then.  They said it was too close. So I called the genetic counselor back and asked why they would refer me there if I would be too far along. She apologized and told me that I wasn’t as far as I was originally told.  She said I was 17 weeks and 3 days on that Tuesday, the 12th. So I called back and told the receptionist what the genetic counselor had just told me, and she said they would have to see on their own machine to decide.

When we got there that Friday, they told me my doctor never sent them my medical records, so they knew nothing about me. I filled out some paperwork and then the nurse, Courtney, took Jon and I back to talk about my medical history and for her to do the sonogram. I answered a lot of questions, and she explained the procedure to me. She said the Laminarea were seaweed sticks that she would put into my cervix to dilate it and make it easier on my body. I asked if I was having that done that day, and she told me they don’t do procedures on weekends, they usually only take genetic cases Monday-Thursday. She didn’t even know why I was there on a Friday. After that soaked in, she did the sonogram. She said that the other office had gotten the gestational age wrong. I was over 20 weeks on the 15th. She apologized and told me she felt bad for this being a waste of time, but it wasn’t her fault. So I went out and told Jon what she said and we waited to find out what to do next. We sat in the office from 12:30 to 4:30, and found nothing out. They said I would need to be in an OR instead of right there in their clinic because I was so far along and they wanted me to be safe. They needed to talk to the doctor to see if he would make an exception, as well as my insurance to see if they would still cover the procedure because it would need to be in-patient instead of out-patient. Courtney told me she would call me first thing on Monday to tell me what she found out. She said plan on having the Laminarea placed Monday and the procedure early Tuesday morning. She also told me that with the Laminarea in, I couldn’t be more than 20 minutes away from the hospital in case I went into labor or my water broke.

Monday morning I got a call at 8:45 am from another genetic counselor at the Advanced Fetal Care place below the other office I had been to in the hospital. She asked me to come in at 12:30 to see her before I went upstairs to see Courtney. Since Jon was in school, my mom went with me. Courtney called while we were on our way and told me that my insurance was not going to cover the procedure if it had to be in-patient and that I would have to wait until the doctor called them back to explain the special circumstances to have the procedure. When we got to the Advanced Fetal Care place, I waited 45 minutes before they called me back. I went back for another sonogram to confirm that nothing had changed. My nurse told me I was 21 weeks and 3 days. My mom had never seen my baby before, so she got to see her grandson for the first time. But she was having trouble finding his head as well, so she told me she needed to do an internal sonogram to get some better pictures. My mom left the room for that one. Once the nurse was done, she sent me back out to the waiting room to wait to talk to the genetic counselor. She came to get us about 10 minutes later, and we went in the room to talk to her.  She told us nothing had changed. I asked if I could have a copy of the sonogram pictures, and she told me she’d bring them right back. My mother asked me if I was sure, but I didn’t want to forget my son just because he wouldn’t be there anymore. That would be my last reminder of him. So she came back and went through them with us to show us what was what. I’m glad she did, I don’t think I would have known some of them otherwise.

After we left there we went upstairs to see Courtney and find out what was going on. She said that the doctor had talked to the insurance, and they still weren’t going to cover it, so he made an exception for me so I could get it over with. She told me I had to come back Wednesday for the Laminarea and stay that night and then come at 7:30 Thursday morning for the procedure. I signed most of my consent forms, and then I got to go home.

Wednesday morning at 9 I was back in the office. I had no idea what they were going to do, but I wish I knew it was going to be that painful. I didn’t really put two and two together when she told me she would be putting things in my cervix. Ouch. So I was laying spread eagle on the table, and she put the spectrum in (I hate those.), and she told me not to move because she was going to put the needle in to numb my cervix.  Wow, what a painful experience. She gave me 2 shots, one on each side I’m guessing, and put something else in too. I told her not to tell me what she was doing or I would freak out. I just asked them to talk to me. So Kelly, the other nurse, held my hand and talked to me. It was very painful though. She usually only has to place 4-6 of those sticks in. For me, she put in 11. Because I was so far along they didn’t want to damage my cervix, so she had to put in more. It hurt a lot, but once she took the spectrum out, I was ok. Those things are so awful, I hate that they’re necessary.

For the rest of the night, I just had bad cramping. She gave me a prescription for Percocet so that I could sleep, but when I took one I threw it right back up. They didn’t seem to agree with my stomach. Jon’s birthday was on the 17th and for his present I got him tickets to see his favorite band, Muse. The show just happened to be that Wednesday night, the 27th, that I had to stay close to the hospital. My dad paid for me and my mom to stay in a hotel, and Jon got there at about 3 am when he got back from the concert after a 3 hour drive. I was just happy to have him there, I was in so much pain and I just needed him with me. We got up in the morning and went to the hospital. My dad came to be with me before I went in, and to see me when I came out. I had to take Cytocec two hours before my procedure to speed along the process, so I was in a lot of pain when he saw me. We went upstairs and they took me back right away. Jon was parking the car so I didn’t see him before I went back. I sat back there for about an hour because we had to wait for the doctor. He was very nice, and made me feel very comfortable. The drugs they gave me were supposed to make me out of it, but I was aware of everything going on during the procedure. I was definitely out of it, but I was still aware. It was painful, there was a lot of pressure and I could feel the baby come out. I felt him leave my body. I asked Courtney before they took me back if she was going to be in there with me and she said “no, did you want me to be?” and I said yes.  She was holding my hands the whole time and I just cried. She kept telling me how good I was doing and that it would be over soon. When he was done he placed an IUD in so that this wouldn’t happen unexpectedly again. I had been on birth control pills when I got pregnant, which was why I found out so late.

Once it was all over, they put me in a wheel chair and rolled me to the recovery room. They wrapped me in a blanket and I kind of dozed off until my blood pressure was automatically taken every 15 minutes and that would wake me back up. I had to stay for an hour after so they could observe me, and at 10:30 I got to go out to the waiting room to see my mom, dad, and Jon. My mother jumped up and attacked me once I walked through the door; she was very happy to see me. My dad looked like he was about to cry, and Jon was crying. They all told me how much they loved me, and took turns hugging me repeatedly.

I had to fill out the death certificate before the procedure because I was so far along. I named our son Zachary Jonathan. He left me at 21 weeks and 6 days. We love him, and will never forget him. I miss him so much.

You can contact Danielle at mausmaus8144@aol.com.