Monday, May 16, 2005…
Expecting a typical long Monday at work, I got up and went to the office to see my first client. After coming out of my 10:00 session, Karen, the office manager, informed me that my entire evening had fallen apart and all of my clients from 3-8pm had cancelled. She said she had contacted others to move to those slots but no one was able to reschedule. I left at 2:00 for lunch not knowing if I would be returning to see other clients later in the evening. Shortly after arriving home for lunch, David came home and so we ended up eating together. After finishing our lunch, David said he needed to tell me something. I didn’t know what the something was but I felt myself getting anxious. David explained that he had received a call from Dr. Landwehr’s office that morning and was told that we needed to come in for a 4:00 appointment to discuss the results of the amniocentesis. David decided that he should have Karen cancel all of my evening appointments. He was not given anymore information but we knew that they would not ask us to come into the office to discuss normal results. My heart absolutely sank. For the next 1 ½ hours, we waited as if we were anticipating a life sentencing. We took a walk in the neighborhood to help time pass more quickly. I felt that I would go stir crazy sitting in our room just thinking about it. We didn’t talk much before the appointment but I did tell David that I didn’t feel that they were going to tell us that Zoe has Down’s syndrome. I expressed that I was afraid that they would tell us that our baby was going to die and that I would be carrying it for another 5 months.
4:00pm, May 16, 2005…
We hesitantly walked into the doctor’s office waiting room shortly before 4:00. Our friend and nurse, Karen Renner, called us from the waiting room and escorted us to Doctor Landwehr’s personal office. We sat there waiting for him until 4:45…not saying much…just waiting. Dr. Landwehr finally entered and apologized for the wait. He was nervous and stumbling over his words as he told us that our little girl has a genetic disorder called Trisomy 13. He said that because the disorder occurred due to a Robertsonian translocation, it is highly likely that either David or I is a carrier and therefore would not be able to produce a child without Trisomy 13. We were given the devastating facts that 50% of these babies die before birth and the average lifespan is 2 ½ days for those that survive due to the extreme physical abnormalities and mental deficiencies. At that moment, our lives were altered forever. I could not speak, only cry. Dr. Landwehr was beside himself. It was obvious that giving us this news was also devastating to him. He graciously offered to do whatever he could to help us be as comfortable as possible. He said that he would perform free ultrasounds every week in order for us to know how Zoe is doing.
Dr. Landwehr did an ultrasound before we left his office. I could barely look at the monitor fearing that my baby would already be showing signs of the Trisomy 13 or that she had possibly already died. Zoe’s heart was beating strong and she was moving, but there didn’t seem to be as much movement as in previous ultrasounds. The amniotic membrane was starting to collapse and Dr. Landwehr said this is likely due to Zoe’s kidneys not working as well as they should. There also seemed to be something wrong with her bowels. He pointed out that she has the two lobes of the brain and then noticed that the fingers on her right hand were spread open. There appear to be 6 fingers. David said that was the kicker for him…neither of us know anyone with 6 fingers. Oh, our precious baby girl… How could this be happening to us? The baby that I am carrying is going to die…
Monday night…
I thought my head was going to explode from crying and confusion. All of the sudden something that I was so thrilled about (being pregnant) was no longer a thought that brought me joy. Instead of embracing my pregnancy and my changing body, I now desired to hide it so no one would ask me questions or stare at me like I should be happy.
I did not talk to anyone that night. No words could come out. I was just so confused, hurt, and broken. Danny and Nichole knew something was wrong but we hadn’t even told them in the first 2 hours that we had been home. Nichole made us dinner and we ate it in the isolation of our bedroom. We told them that we would want to talk to them after we finished eating.
After supper, Danny and Nichole came upstairs. They had to bring Hannah with them but Josiah was distracted by a movie downstairs. David did the talking and I basically just sat there with my head hung low. He told Danny and Nichole about the Trisomy 13 and that the baby I am carrying has a very small chance of surviving. Danny and Nichole sobbed. Their hearts were obviously breaking for us. They did not know what to say but that was okay by us. There were simply no consoling words to offer, but to know that they were hurting so badly with us meant something.
David made a few phone calls that night to people who were affected by the schedule change of our day and therefore knew that we had the dreaded doctor’s appointment. David was drained. He had to rehash the devastating news with these friends and each time he said it, the pain was driven deeper and deeper.
Sleepless nights…
It seems that 4am would become my new wake up time for the next several days. I would awaken after struggling for hours to fall asleep initially and my mind would start racing and I couldn’t control the sobbing. I was scared to see my baby. I imagined her being so incredibly deformed. How can it be right to be afraid to see your baby? I imagined that the amniotic sac that is collapsing is slowly suffocating her and killing her inside my body. I felt her kick most often when I was lying down and since I was completely depleted of energy, lying down became a typical state. I used to long to feel her move… and now, how could something that I had longed for now make me feel strange and gross?
David would take early morning walks with me since it was torture to just lay there thinking. He was being so compassionate and tuned in to my needs. It was such torture for David to see me broken this way. He listened and held me when I cried.
Tuesday morning, 6:30am…
After having been awake for a couple of hours, David and I decided to see if his dad and Karen were awake. We told them that we had had our doctor’s appointment yesterday and that we wanted to talk with them. They told us to come on over.
Again, David did the talking while I sat there with my head hung low, just crying. Al and Karen cried with us. They were so, so sorry that this was happening to us.
The email…
On Tuesday night, I had the house to myself for a couple of hours. David, Danny and Nichole and the kids had gone to the Living Room for the Tuesday evening service. Though it would be draining for him, David felt that it would be a good idea for him to deliver the message that he already had prepared. I decided that I would take this time to write an email to a couple of friends explaining what was happening. In the course of writing the email, Nichole returned home with Josiah and Hannah. She said she was sorry for interrupting my time but she just couldn’t be there and act like everything was okay. Josiah asked me if I was feeling better (he had been told that I was sick and that was why I was in bed so much). With tears in my eyes, I told him that I was not much better yet. Nichole took the kids upstairs for a bath and I finished the email. The next day, David would send this email to our entire small group, the elders and other leaders in the church, and the group of young adults in the Living Room ministry. This is what the email said…
Expecting a typical long Monday at work, I got up and went to the office to see my first client. After coming out of my 10:00 session, Karen, the office manager, informed me that my entire evening had fallen apart and all of my clients from 3-8pm had cancelled. She said she had contacted others to move to those slots but no one was able to reschedule. I left at 2:00 for lunch not knowing if I would be returning to see other clients later in the evening. Shortly after arriving home for lunch, David came home and so we ended up eating together. After finishing our lunch, David said he needed to tell me something. I didn’t know what the something was but I felt myself getting anxious. David explained that he had received a call from Dr. Landwehr’s office that morning and was told that we needed to come in for a 4:00 appointment to discuss the results of the amniocentesis. David decided that he should have Karen cancel all of my evening appointments. He was not given anymore information but we knew that they would not ask us to come into the office to discuss normal results. My heart absolutely sank. For the next 1 ½ hours, we waited as if we were anticipating a life sentencing. We took a walk in the neighborhood to help time pass more quickly. I felt that I would go stir crazy sitting in our room just thinking about it. We didn’t talk much before the appointment but I did tell David that I didn’t feel that they were going to tell us that Zoe has Down’s syndrome. I expressed that I was afraid that they would tell us that our baby was going to die and that I would be carrying it for another 5 months.
4:00pm, May 16, 2005…
We hesitantly walked into the doctor’s office waiting room shortly before 4:00. Our friend and nurse, Karen Renner, called us from the waiting room and escorted us to Doctor Landwehr’s personal office. We sat there waiting for him until 4:45…not saying much…just waiting. Dr. Landwehr finally entered and apologized for the wait. He was nervous and stumbling over his words as he told us that our little girl has a genetic disorder called Trisomy 13. He said that because the disorder occurred due to a Robertsonian translocation, it is highly likely that either David or I is a carrier and therefore would not be able to produce a child without Trisomy 13. We were given the devastating facts that 50% of these babies die before birth and the average lifespan is 2 ½ days for those that survive due to the extreme physical abnormalities and mental deficiencies. At that moment, our lives were altered forever. I could not speak, only cry. Dr. Landwehr was beside himself. It was obvious that giving us this news was also devastating to him. He graciously offered to do whatever he could to help us be as comfortable as possible. He said that he would perform free ultrasounds every week in order for us to know how Zoe is doing.
Dr. Landwehr did an ultrasound before we left his office. I could barely look at the monitor fearing that my baby would already be showing signs of the Trisomy 13 or that she had possibly already died. Zoe’s heart was beating strong and she was moving, but there didn’t seem to be as much movement as in previous ultrasounds. The amniotic membrane was starting to collapse and Dr. Landwehr said this is likely due to Zoe’s kidneys not working as well as they should. There also seemed to be something wrong with her bowels. He pointed out that she has the two lobes of the brain and then noticed that the fingers on her right hand were spread open. There appear to be 6 fingers. David said that was the kicker for him…neither of us know anyone with 6 fingers. Oh, our precious baby girl… How could this be happening to us? The baby that I am carrying is going to die…
Monday night…
I thought my head was going to explode from crying and confusion. All of the sudden something that I was so thrilled about (being pregnant) was no longer a thought that brought me joy. Instead of embracing my pregnancy and my changing body, I now desired to hide it so no one would ask me questions or stare at me like I should be happy.
I did not talk to anyone that night. No words could come out. I was just so confused, hurt, and broken. Danny and Nichole knew something was wrong but we hadn’t even told them in the first 2 hours that we had been home. Nichole made us dinner and we ate it in the isolation of our bedroom. We told them that we would want to talk to them after we finished eating.
After supper, Danny and Nichole came upstairs. They had to bring Hannah with them but Josiah was distracted by a movie downstairs. David did the talking and I basically just sat there with my head hung low. He told Danny and Nichole about the Trisomy 13 and that the baby I am carrying has a very small chance of surviving. Danny and Nichole sobbed. Their hearts were obviously breaking for us. They did not know what to say but that was okay by us. There were simply no consoling words to offer, but to know that they were hurting so badly with us meant something.
David made a few phone calls that night to people who were affected by the schedule change of our day and therefore knew that we had the dreaded doctor’s appointment. David was drained. He had to rehash the devastating news with these friends and each time he said it, the pain was driven deeper and deeper.
Sleepless nights…
It seems that 4am would become my new wake up time for the next several days. I would awaken after struggling for hours to fall asleep initially and my mind would start racing and I couldn’t control the sobbing. I was scared to see my baby. I imagined her being so incredibly deformed. How can it be right to be afraid to see your baby? I imagined that the amniotic sac that is collapsing is slowly suffocating her and killing her inside my body. I felt her kick most often when I was lying down and since I was completely depleted of energy, lying down became a typical state. I used to long to feel her move… and now, how could something that I had longed for now make me feel strange and gross?
David would take early morning walks with me since it was torture to just lay there thinking. He was being so compassionate and tuned in to my needs. It was such torture for David to see me broken this way. He listened and held me when I cried.
Tuesday morning, 6:30am…
After having been awake for a couple of hours, David and I decided to see if his dad and Karen were awake. We told them that we had had our doctor’s appointment yesterday and that we wanted to talk with them. They told us to come on over.
Again, David did the talking while I sat there with my head hung low, just crying. Al and Karen cried with us. They were so, so sorry that this was happening to us.
The email…
On Tuesday night, I had the house to myself for a couple of hours. David, Danny and Nichole and the kids had gone to the Living Room for the Tuesday evening service. Though it would be draining for him, David felt that it would be a good idea for him to deliver the message that he already had prepared. I decided that I would take this time to write an email to a couple of friends explaining what was happening. In the course of writing the email, Nichole returned home with Josiah and Hannah. She said she was sorry for interrupting my time but she just couldn’t be there and act like everything was okay. Josiah asked me if I was feeling better (he had been told that I was sick and that was why I was in bed so much). With tears in my eyes, I told him that I was not much better yet. Nichole took the kids upstairs for a bath and I finished the email. The next day, David would send this email to our entire small group, the elders and other leaders in the church, and the group of young adults in the Living Room ministry. This is what the email said…
This is David. I want to update you on my wife, Christina's, pregnancy. It has been a tough couple of days. This is what Christina wrote earlier and what I wanted to share with you: Over the past month, our doctor has performed the components of something called the triple screen which screens mainly for Down's syndrome. The first step is to measure the skin thickness on the back of the neck of our baby. Since the skin thickness was slightly above normal, I had a blood test done...the blood test suggested that I had a 1 in 78 risk that we would have a baby with Down's syndrome. Because our doctor felt this was high, he suggested that we do amniocentesis to provide peace of mind because it would give us results with 99.9% accuracy. The results were supposed to take two weeks...we received a call from the doctor on Monday and were told that we needed to come in for an appointment at 4:00. The time since the appointment has been possibly the hardest time of my life. David and I were not told that our baby has Down's syndrome. We were told that our baby has something called Trisomy 13. It is a genetic problem that likely occurred because one of us is a carrier and therefore we would never be able to have a biological child without this disorder. I am 18 1/2 weeks pregnant and we are having a girl. There is a 50% chance that she will die in utero. There is an 80-85% chance she will die in the first 6 months of life and there is a 95% chance that she will die within the first two years of life. If she survives birth, she will have severe deformities and severe mental retardation. We are devastated to say the least. We are basically waiting for our baby to die and I am having a very, very hard time with it. I am sorry if this feels like too much to handle...there is no way to sugar coat it. Any way you look at it, it is a bad situation. We are having ultrasounds every week to see if the baby is still alive. We would really welcome your prayers.People are asking what they can do...we need your prayers. If you desire to say something to David or I about this, we would prefer emails or cards at this time. It is very difficult to talk about right now. David's email address is davidsmith777@yahoo.com. There is also a website that David has referred others to if you desire to find out more about Trisomy 13. It is www.geocities.com/wilsfordmindy/trisomy13resources.html.
Thank you for your prayers.
Christina
Wednesday, May 18, 2005…
I again awakened David at about 4am sobbing. We decided to take another walk through our neighborhood. Though, I was still extremely sad, it was apparent that our situation was really starting to hit David hard. He was very emotional throughout the walk. We would just stop and hold each other for comfort.
This was going to be a very long day. Earlier this month, I had registered for a counseling conference in Indianapolis and had already paid my $150. Because I didn’t think I would be interacting with many people, I thought that I would go ahead and attend. I traveled to Indy with another therapist from Briarwood (Becky Licht) and she listened to me talk about the emotions I have been experiencing. It was hard to talk but this was the first chance I had given myself to express my real feelings to someone other than David and I think it was good for me (at least a little). The conference was horribly exhausting for me though. The room was crowded, my head was spinning, and I was nauseous the entire day. It was tough being away from the safety of David and my bedroom that I had rarely left over the past two days. David gave me his cell phone and I called him throughout the day. We were both having a tough day. I was trying to distract myself a little by attending the conference and he was trying to do the same by working in the yard. It was wonderful to see him when I finally returned home.
The long trip to Ohio (5/18/05)…
David and I could not bear to share the news with my parents over the phone. We decided that once I returned home from the conference, we would take off to Ohio. They did not know that we were coming because they would have worried the entire time we were on our way. It is not like us to make trips to Ohio in the middle of the week for no apparent reason. We decided that we would call them once we were about 5 minutes from their house. I had dreaded this trip since we received the news on Monday. My parents are going through so much right now and I just did not want to have them hurt anymore than they already do. As we got closer and closer to Van Wert, I felt as if I was going to have a panic attack. David and I both felt that what we were about to do was going to be extremely difficult.
When we stepped into my parent’s house, you could tell that they knew we were about to give them bad news. We told them about the Trisomy 13 and they cried…hard. They kept saying that they just didn’t know what to say. Mom and dad came over to sit with me on the couch and they just put their arms around me and cried. It was so hard for them to see their own baby girl going through such pain. Mom wanted to know how I could get through this knowing that the baby I am carrying is going to die. I told her that I am not sure but that it is important for me to have the freedom to express the good, bad, and ugly feelings that I am having and that David has allowed me to do that. My dad was really concerned that I am going to be endangered because of the defects of the baby. Though I am not in any physical danger at this time, David assured my dad that my safety will come before the baby if we are faced with that situation.
I again awakened David at about 4am sobbing. We decided to take another walk through our neighborhood. Though, I was still extremely sad, it was apparent that our situation was really starting to hit David hard. He was very emotional throughout the walk. We would just stop and hold each other for comfort.
This was going to be a very long day. Earlier this month, I had registered for a counseling conference in Indianapolis and had already paid my $150. Because I didn’t think I would be interacting with many people, I thought that I would go ahead and attend. I traveled to Indy with another therapist from Briarwood (Becky Licht) and she listened to me talk about the emotions I have been experiencing. It was hard to talk but this was the first chance I had given myself to express my real feelings to someone other than David and I think it was good for me (at least a little). The conference was horribly exhausting for me though. The room was crowded, my head was spinning, and I was nauseous the entire day. It was tough being away from the safety of David and my bedroom that I had rarely left over the past two days. David gave me his cell phone and I called him throughout the day. We were both having a tough day. I was trying to distract myself a little by attending the conference and he was trying to do the same by working in the yard. It was wonderful to see him when I finally returned home.
The long trip to Ohio (5/18/05)…
David and I could not bear to share the news with my parents over the phone. We decided that once I returned home from the conference, we would take off to Ohio. They did not know that we were coming because they would have worried the entire time we were on our way. It is not like us to make trips to Ohio in the middle of the week for no apparent reason. We decided that we would call them once we were about 5 minutes from their house. I had dreaded this trip since we received the news on Monday. My parents are going through so much right now and I just did not want to have them hurt anymore than they already do. As we got closer and closer to Van Wert, I felt as if I was going to have a panic attack. David and I both felt that what we were about to do was going to be extremely difficult.
When we stepped into my parent’s house, you could tell that they knew we were about to give them bad news. We told them about the Trisomy 13 and they cried…hard. They kept saying that they just didn’t know what to say. Mom and dad came over to sit with me on the couch and they just put their arms around me and cried. It was so hard for them to see their own baby girl going through such pain. Mom wanted to know how I could get through this knowing that the baby I am carrying is going to die. I told her that I am not sure but that it is important for me to have the freedom to express the good, bad, and ugly feelings that I am having and that David has allowed me to do that. My dad was really concerned that I am going to be endangered because of the defects of the baby. Though I am not in any physical danger at this time, David assured my dad that my safety will come before the baby if we are faced with that situation.
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