Dear Mr. Sparks,
My story starts on March 18, 1997 I found out I was pregnant with my first child and my husband and I were so excited our dreams were shattered on April 11, 97 when I began to bleed, a trip to the Dr. confirmed my worst fear I was indeed miscarrying. I was devastated and thought nothing in the world could hurt that bad. I was advised by my dr's to wait three months before trying again to prevent another miscarriage but I felt I was ready to try and just 2 months later on June 22, 1997 I found I was pregnant with my little Zachery. I can't describe the feeling it was almost as if the pain of my miscarriage was being replaced with hope for the future. I had ultrasounds at 7, 10 and 16 weeks just to make sure everything was ok and I was told I was having a very healthy baby. I had a very uneventful pregnancy up to that point but for some reason I didn't feel right, I felt something was wrong with my baby and I requested another ultrasound at 20 weeks but my Dr. refused saying that it was not justified we already knew everything was perfect. I quickly learned of a man who would come to my home for $75.00 and do an ultrasound in my living room so that my whole family could attend and we could find out the sex of our baby. This man was very nice and we quickly learned we were having a little baby boy. I started to cry somehow knowing that I had a little boy inside of me made me feel even closer to my baby. This man was only supposed to tell us the sex of our baby nothing else but he started looking around and offering information. No neuro tube defect, no fluid in the brain, stomach, bladder and kidneys all appear to be functioning and in the right place. Good strong heart all 4 chambers. I was thrilled I felt so much better and I knew everything would be just fine. I went the next 7 weeks in which time I had my baby shower since a lot of family would be in town for Thanksgiving they all wanted to throw me a shower and it was perfect. I got everything I needed for my little guy. When I was 27 weeks pregnant I was having a lot of pain in my side and I went to Labor and Delivery as this is where my doctor told me to go. They decided to do an ultrasound to make sure the placenta hadn't started to tear away. I went down to ultrasound where the technician showed me my baby's face and confirmed the fact that we were having a little boy (he wasn't shy). I was so happy and was told my placenta looked just fine. Then she asked if I could wait outside of the room that she would like the radiologist to come take a look at my baby. I asked why and she replied that they can usually get a better look. Well I knew something was wrong I had several ultrasounds before this one and never did the radiologist have to come take a look. I waited alone in that hallway for a half hour wondering what was wrong with my baby. Finally the radiologist came and I noticed he was really looking at Zachery's brain I asked quietly what was wrong. He replied "your babies ventricles in his brain are dilated) What does this mean I asked. He said that I would have to talk with my Dr. and that I was to go to his office right away. I drove hysterically to my dr's office where I learned that Zachery had Hydrocephalus (fluid in his brain) and that it appeared to be severe. I also learned I had too much amniotic fluid and that he was sending me for a level 2 ultrasound. I called the Perinetal Dr's to make my appt for this ultrasound and was informed I could not be seen for 3 days. I immediately started screaming that I could not wait that long and the appt was scheduled for the following day. I went to the office with my Mother, I told my husband to go ahead and go to work that they probably wouldn't tell me anything new. Boy was I wrong. I learned that day that Zachery had very severe Hydrocephalus and that he also had CDH and that his heart was on the wrong side so they thought it was a pretty big hernia. He also had clenched fists probably due to the compression in his brain and I was told the prognosis for my son was very poor. I also had an amnio to see if maybe there was a chromosomal abnormality but it came back normal. I left the office hysterical and stayed that way for 48 hours, I then decided I would find out everything I could about my baby's problems and I got on the internet and found CHERUBS. I have to tell you that reading all of the stories about the baby's who had survived helped me tremendously. I now had hope that we would have a miracle. I went through the next weeks seeing surgeons and having weekly ultrasounds and bi-weekly Dr. visits. I also used this time to bond with my precious baby who was very active and I just knew everything would be ok. we would fight. At 30 weeks I began steroid injections to help with lung development. I also went in for a drain of my amniotic fluid because I was measuring 48cm which is like full term with twins. A lot of extra fluid. I was ok after that and prayed every hour everyday for our miracle. My fluid slowly started to creep back up and at 33.5 weeks I needed to go to the hospital for another drain. Everything went smoothly and my contractions were no worse than before so they allowed me to go home. I woke up the next morning and called my best friend to chat. As I was on the phone I felt a huge gush and realized that my water had broke. My husband rushed me to the hospital and the contractions were really coming on strong. They immediately put me on Magnesium sulfate to stop my labor, they said if Zachery was born now he surely would not survive. I laid in bed on this drip all day. In the evening one of the Dr's came in and said what are you doing on this medication, we don't put people on this med after 32 weeks so I was taken off of it. My contractions started again a couple hours later and I went through the night in a lot of pain, trying to be quiet and let my husband and mother get some sleep. In the morning around 5am another Dr. came in and said why are you off of your medication, I replied that another Dr. had taken me off and she quickly gave me an injection of terbuteline to once again stop my labor. Saying we cannot have this baby right now. I was really angered at this point and suggested that all the Dr's figure out what they were doing. She said they would have a meeting and she would be back with the final decision. A few hours and 2 terbutaline injections later she came back and said that they didn't feel Zachery had a very good chance to live whether he was born now or in two weeks and that because my membranes had ruptured I was at risk for infection which would harm me and my baby. They then took my temperature and discovered that I was already starting to get this infection and decided that I would again be allowed to start laboring. This is when my Mother jumped in and said why are you going to put her through any more pain with labor when you are planning to do a C-section any way due to the Hydrocephalus. They agreed and the team was put in place. The Anesthesiologist came in and said he would allow my husband, mother and mother in law in the operating room with me (a definite first for this hospital) I was taken for my spinal and they could come after I was numb. Well that was an ordeal in itself. I was poked in the spine 23 times as I cried and the Anesthesiologist got frustrated saying my disc spaces were too close together. He finally decided to do a spinal with an epidural needle and my legs went numb. This took an hour and a half so my family was horrified as they walked in. It was now time to deliver my little boy. I took a deep breath and said one last prayer. Zachery was born at 1:50pm on Jan 29, 1998 he was immediately whisked to the baby warmer next to me where the neonatologist was waiting to intubate him. I only saw a glimpse of him for a brief second as they carried him over there. I remember thinking the whole time Cry, Cry please Cry, but he didn't. I was listening very closely and I heard the nurse say I have a heartbeat and the other nurse saying I have breath sounds on both sides. I was thinking that was all a very good sign. Then it happened, the anesthesiologist came over and said they were having a hard time intubating Zachery because he had some kind of deformity in his neck but that they were still trying very hard. The room was silent as my baby fought for his life. The next words I heard were. "we are very sorry there is nothing more we can do, your baby is still alive would you like to hold him". Of course I want to hold him! They laid Zachery on my chest while they were still closing my incision. He never opened his eyes or gasped for air, he was perfectly still and very peaceful. His heart stopped beating as I held him. I will forever be grateful that he died in my arms instead of on that table surrounded by strangers. He was so beautiful and perfect to me in every way. I have never felt love the way I did at that moment. I was taken to recovery still holding my baby and that is where I learned that when they went to intubate him he did not have a trachea or esophagus instead he had one tube which they assume was a combination of the two and they had never separated. My family was brought into the recovery room as we all held my son and cried for almost 3 hours. I can't even put into words the pain I felt and still feel. I love that little boy more than I could ever love again and my heart aches day after day as I look at his pictures and talk to him. I even find myself screaming "give me my baby back" but no one ever answers me. A week after I got home I got a call from the geneticist he suspected Zachery may have had a very rare genetic syndrome and the possibility of this happening in the future was great. Now not only was I mourning the loss of my sweet Zachery but I felt I had no hope for the future. I am happy to say I got the final report just days ago and Zachery did not fit this syndrome or any other genetic syndrome and the Dr's do not think this will happen again. Thank you God! I know my baby is in heaven yet I feel him with me all the time. I know he can hear me when I talk to him and sometimes I even feel like he answers me. I have a hard road ahead of me. Each day seems more impossible than the day before.
Written by Zachary's mom, Jennifer Wasik (Arizona)
My story starts on March 18, 1997 I found out I was pregnant with my first child and my husband and I were so excited our dreams were shattered on April 11, 97 when I began to bleed, a trip to the Dr. confirmed my worst fear I was indeed miscarrying. I was devastated and thought nothing in the world could hurt that bad. I was advised by my dr's to wait three months before trying again to prevent another miscarriage but I felt I was ready to try and just 2 months later on June 22, 1997 I found I was pregnant with my little Zachery. I can't describe the feeling it was almost as if the pain of my miscarriage was being replaced with hope for the future. I had ultrasounds at 7, 10 and 16 weeks just to make sure everything was ok and I was told I was having a very healthy baby. I had a very uneventful pregnancy up to that point but for some reason I didn't feel right, I felt something was wrong with my baby and I requested another ultrasound at 20 weeks but my Dr. refused saying that it was not justified we already knew everything was perfect. I quickly learned of a man who would come to my home for $75.00 and do an ultrasound in my living room so that my whole family could attend and we could find out the sex of our baby. This man was very nice and we quickly learned we were having a little baby boy. I started to cry somehow knowing that I had a little boy inside of me made me feel even closer to my baby. This man was only supposed to tell us the sex of our baby nothing else but he started looking around and offering information. No neuro tube defect, no fluid in the brain, stomach, bladder and kidneys all appear to be functioning and in the right place. Good strong heart all 4 chambers. I was thrilled I felt so much better and I knew everything would be just fine. I went the next 7 weeks in which time I had my baby shower since a lot of family would be in town for Thanksgiving they all wanted to throw me a shower and it was perfect. I got everything I needed for my little guy. When I was 27 weeks pregnant I was having a lot of pain in my side and I went to Labor and Delivery as this is where my doctor told me to go. They decided to do an ultrasound to make sure the placenta hadn't started to tear away. I went down to ultrasound where the technician showed me my baby's face and confirmed the fact that we were having a little boy (he wasn't shy). I was so happy and was told my placenta looked just fine. Then she asked if I could wait outside of the room that she would like the radiologist to come take a look at my baby. I asked why and she replied that they can usually get a better look. Well I knew something was wrong I had several ultrasounds before this one and never did the radiologist have to come take a look. I waited alone in that hallway for a half hour wondering what was wrong with my baby. Finally the radiologist came and I noticed he was really looking at Zachery's brain I asked quietly what was wrong. He replied "your babies ventricles in his brain are dilated) What does this mean I asked. He said that I would have to talk with my Dr. and that I was to go to his office right away. I drove hysterically to my dr's office where I learned that Zachery had Hydrocephalus (fluid in his brain) and that it appeared to be severe. I also learned I had too much amniotic fluid and that he was sending me for a level 2 ultrasound. I called the Perinetal Dr's to make my appt for this ultrasound and was informed I could not be seen for 3 days. I immediately started screaming that I could not wait that long and the appt was scheduled for the following day. I went to the office with my Mother, I told my husband to go ahead and go to work that they probably wouldn't tell me anything new. Boy was I wrong. I learned that day that Zachery had very severe Hydrocephalus and that he also had CDH and that his heart was on the wrong side so they thought it was a pretty big hernia. He also had clenched fists probably due to the compression in his brain and I was told the prognosis for my son was very poor. I also had an amnio to see if maybe there was a chromosomal abnormality but it came back normal. I left the office hysterical and stayed that way for 48 hours, I then decided I would find out everything I could about my baby's problems and I got on the internet and found CHERUBS. I have to tell you that reading all of the stories about the baby's who had survived helped me tremendously. I now had hope that we would have a miracle. I went through the next weeks seeing surgeons and having weekly ultrasounds and bi-weekly Dr. visits. I also used this time to bond with my precious baby who was very active and I just knew everything would be ok. we would fight. At 30 weeks I began steroid injections to help with lung development. I also went in for a drain of my amniotic fluid because I was measuring 48cm which is like full term with twins. A lot of extra fluid. I was ok after that and prayed every hour everyday for our miracle. My fluid slowly started to creep back up and at 33.5 weeks I needed to go to the hospital for another drain. Everything went smoothly and my contractions were no worse than before so they allowed me to go home. I woke up the next morning and called my best friend to chat. As I was on the phone I felt a huge gush and realized that my water had broke. My husband rushed me to the hospital and the contractions were really coming on strong. They immediately put me on Magnesium sulfate to stop my labor, they said if Zachery was born now he surely would not survive. I laid in bed on this drip all day. In the evening one of the Dr's came in and said what are you doing on this medication, we don't put people on this med after 32 weeks so I was taken off of it. My contractions started again a couple hours later and I went through the night in a lot of pain, trying to be quiet and let my husband and mother get some sleep. In the morning around 5am another Dr. came in and said why are you off of your medication, I replied that another Dr. had taken me off and she quickly gave me an injection of terbuteline to once again stop my labor. Saying we cannot have this baby right now. I was really angered at this point and suggested that all the Dr's figure out what they were doing. She said they would have a meeting and she would be back with the final decision. A few hours and 2 terbutaline injections later she came back and said that they didn't feel Zachery had a very good chance to live whether he was born now or in two weeks and that because my membranes had ruptured I was at risk for infection which would harm me and my baby. They then took my temperature and discovered that I was already starting to get this infection and decided that I would again be allowed to start laboring. This is when my Mother jumped in and said why are you going to put her through any more pain with labor when you are planning to do a C-section any way due to the Hydrocephalus. They agreed and the team was put in place. The Anesthesiologist came in and said he would allow my husband, mother and mother in law in the operating room with me (a definite first for this hospital) I was taken for my spinal and they could come after I was numb. Well that was an ordeal in itself. I was poked in the spine 23 times as I cried and the Anesthesiologist got frustrated saying my disc spaces were too close together. He finally decided to do a spinal with an epidural needle and my legs went numb. This took an hour and a half so my family was horrified as they walked in. It was now time to deliver my little boy. I took a deep breath and said one last prayer. Zachery was born at 1:50pm on Jan 29, 1998 he was immediately whisked to the baby warmer next to me where the neonatologist was waiting to intubate him. I only saw a glimpse of him for a brief second as they carried him over there. I remember thinking the whole time Cry, Cry please Cry, but he didn't. I was listening very closely and I heard the nurse say I have a heartbeat and the other nurse saying I have breath sounds on both sides. I was thinking that was all a very good sign. Then it happened, the anesthesiologist came over and said they were having a hard time intubating Zachery because he had some kind of deformity in his neck but that they were still trying very hard. The room was silent as my baby fought for his life. The next words I heard were. "we are very sorry there is nothing more we can do, your baby is still alive would you like to hold him". Of course I want to hold him! They laid Zachery on my chest while they were still closing my incision. He never opened his eyes or gasped for air, he was perfectly still and very peaceful. His heart stopped beating as I held him. I will forever be grateful that he died in my arms instead of on that table surrounded by strangers. He was so beautiful and perfect to me in every way. I have never felt love the way I did at that moment. I was taken to recovery still holding my baby and that is where I learned that when they went to intubate him he did not have a trachea or esophagus instead he had one tube which they assume was a combination of the two and they had never separated. My family was brought into the recovery room as we all held my son and cried for almost 3 hours. I can't even put into words the pain I felt and still feel. I love that little boy more than I could ever love again and my heart aches day after day as I look at his pictures and talk to him. I even find myself screaming "give me my baby back" but no one ever answers me. A week after I got home I got a call from the geneticist he suspected Zachery may have had a very rare genetic syndrome and the possibility of this happening in the future was great. Now not only was I mourning the loss of my sweet Zachery but I felt I had no hope for the future. I am happy to say I got the final report just days ago and Zachery did not fit this syndrome or any other genetic syndrome and the Dr's do not think this will happen again. Thank you God! I know my baby is in heaven yet I feel him with me all the time. I know he can hear me when I talk to him and sometimes I even feel like he answers me. I have a hard road ahead of me. Each day seems more impossible than the day before.
Written by Zachary's mom, Jennifer Wasik (Arizona)
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