The Long Road to Diagnosis
Brent and I were married on October 20, 2007. We decided that we immediately wanted to start having children. We tried for a few months with no success. In February 2008, I had a TB skin test come back positive. I didn't have the disease, but had been exposed to it at some time. I was put on 6 months on anti-biotics and told not to get pregnant during that time. That was a pretty long 6 months for us.
Finally it was September and we could try again. I got pregnant November 2008 with our first child. I was so excited and completely terrified at the same time. We went for our first doctor's appointment and found out the baby did not have a heartbeat. I had a D&C in January and we were told to wait 3 months before trying again.
Three months passed and we became pregnant with Kailee the first month we tried. I was at work feeling sick to my stomach. I stopped at the drugstore on the way home and got a pregnancy test and took it when I got home. It popped back positive within a few seconds! Complete and total terror was what I felt. I was happy and excited, but I also know there's another side of pregnancy that's not talked about a lot. I went to tell Brent and we began planning for our second pregnancy.
Everything was perfect. We went for our first appointment and got our first picture of our little monkey at 10 weeks. She was doing great. Her heartbeat was strong and there were no problems. Same story at my 14 week appointment. We were scheduled for "the big ultrasound" on September 8th, 2009. I counted down the days and hours until that appointment for weeks! We got our blank DVD so we could catch some shots of our little one.
At the ultrasound, the tech said she was having a hard time seeing things. "Your amniotic fluid looks a little low. It's nothing to worry about." Our doctor told me to try drinking more water, and then we would re-check in a week. No worries, right?
We took the 10 seconds of "good" DVD video that the tech could record, and went home. On the 15th, Brent was unable to come to the ultrasound because they changed my appointment at the last minute. I told him I would be fine and would have the tech put the sex of the baby in a sealed envelope so we could open it together. Little did I know what was about to happen.
When they rescheduled my appointment, they had me go to a doctor's office I didn't know because "they can get a better picture than our machine." I was laying down on the cold, steel ultrasound table when a doctor I had never met before looked at my baby's kidneys and pronounced "This baby have little chance of survival." The room literally stopped. It stopped! I felt like I was in a cartoon and this man with a Chinese accent was "punking" me! I looked at him again and nodded. There were no tears, no emotion, nothing. I just looked at him completely shocked. I honestly thought he was lying to me.
He asked me to come to his office so that we could talk about the baby's diagnosis. He explained what Autosomal Recessive Polycystic Kidney Disease was and discussed terminating the pregnancy. I told him this pregnancy wasn't going to be terminated by me. I told him it was too much information for me to process and asked if I could come back in the afternoon with my husband. "Go get yourself some lunch, and I see you this afternoon" was his response. "GO GET SOME LUNCH????" It shocked me that he would tell me to do something so normal after hearing the worst news of my life.
Brent got to the doctor's office in record time, and we talked with the doctor who told us the same information. An appointment with a high risk doctor at Vanderbilt was made, and we waited until our appointment at the end of September. We met Dr. Boehm at the end of the month. He is an amazing doctor--- probably one of the best we've ever had. Here is a copy of our caringbridge.org journal entry that day:
We had our appointment at Vanderbilt this afternoon. We really love the doctor who worked with us and would recommend him to ANYONE having a high risk pregnancy. His bedside manner was very fatherly and that helped us to digest some pretty difficult news.
It seems like we know less now than before all of this. There are multiple possibilities for why this might be happening including genetics or even just an anomoly. We won't know until after the baby is born and then they will get the appropriate tests to give us more information.
What we do know is the doctor says that there is a 0% chance of survival. Our baby still has the cysts in the kidneys and is producing no amniotic fluid. In addition, the baby has a cystic hygroma---- essentially it's another cyst coming out of the back of the baby's neck.
The doctors and staff were wonderful in making referrals. We will be set up with the Monarch Program (prenatal hospice) which will take us through the steps of getting through the birth. We still have the option to induce, but after talking about it, Brent and I have decided that God has started this baby's heart and it's His decision as to when it stops, not ours. We believe that God is good and that he has a plan- whether it's for our baby to live or whether it's for us to grow stronger as a couple.
Being told that your child will die within minutes of being born is life altering. We made a decision that day that we would not give up hope of being able to meet our little baby. We still didn't know if she was a boy or a girl. (The lack of amniotic fluid made ultrasounds harder to decipher) We were again given the option of inducing labor from the neonatologist. His words were "Go home, check your calendar, decide on a day and we'll induce." I told him that it wasn't my decision to decide the day my child would die.
Finally it was September and we could try again. I got pregnant November 2008 with our first child. I was so excited and completely terrified at the same time. We went for our first doctor's appointment and found out the baby did not have a heartbeat. I had a D&C in January and we were told to wait 3 months before trying again.
Three months passed and we became pregnant with Kailee the first month we tried. I was at work feeling sick to my stomach. I stopped at the drugstore on the way home and got a pregnancy test and took it when I got home. It popped back positive within a few seconds! Complete and total terror was what I felt. I was happy and excited, but I also know there's another side of pregnancy that's not talked about a lot. I went to tell Brent and we began planning for our second pregnancy.
Everything was perfect. We went for our first appointment and got our first picture of our little monkey at 10 weeks. She was doing great. Her heartbeat was strong and there were no problems. Same story at my 14 week appointment. We were scheduled for "the big ultrasound" on September 8th, 2009. I counted down the days and hours until that appointment for weeks! We got our blank DVD so we could catch some shots of our little one.
At the ultrasound, the tech said she was having a hard time seeing things. "Your amniotic fluid looks a little low. It's nothing to worry about." Our doctor told me to try drinking more water, and then we would re-check in a week. No worries, right?
We took the 10 seconds of "good" DVD video that the tech could record, and went home. On the 15th, Brent was unable to come to the ultrasound because they changed my appointment at the last minute. I told him I would be fine and would have the tech put the sex of the baby in a sealed envelope so we could open it together. Little did I know what was about to happen.
When they rescheduled my appointment, they had me go to a doctor's office I didn't know because "they can get a better picture than our machine." I was laying down on the cold, steel ultrasound table when a doctor I had never met before looked at my baby's kidneys and pronounced "This baby have little chance of survival." The room literally stopped. It stopped! I felt like I was in a cartoon and this man with a Chinese accent was "punking" me! I looked at him again and nodded. There were no tears, no emotion, nothing. I just looked at him completely shocked. I honestly thought he was lying to me.
He asked me to come to his office so that we could talk about the baby's diagnosis. He explained what Autosomal Recessive Polycystic Kidney Disease was and discussed terminating the pregnancy. I told him this pregnancy wasn't going to be terminated by me. I told him it was too much information for me to process and asked if I could come back in the afternoon with my husband. "Go get yourself some lunch, and I see you this afternoon" was his response. "GO GET SOME LUNCH????" It shocked me that he would tell me to do something so normal after hearing the worst news of my life.
Brent got to the doctor's office in record time, and we talked with the doctor who told us the same information. An appointment with a high risk doctor at Vanderbilt was made, and we waited until our appointment at the end of September. We met Dr. Boehm at the end of the month. He is an amazing doctor--- probably one of the best we've ever had. Here is a copy of our caringbridge.org journal entry that day:
We had our appointment at Vanderbilt this afternoon. We really love the doctor who worked with us and would recommend him to ANYONE having a high risk pregnancy. His bedside manner was very fatherly and that helped us to digest some pretty difficult news.
It seems like we know less now than before all of this. There are multiple possibilities for why this might be happening including genetics or even just an anomoly. We won't know until after the baby is born and then they will get the appropriate tests to give us more information.
What we do know is the doctor says that there is a 0% chance of survival. Our baby still has the cysts in the kidneys and is producing no amniotic fluid. In addition, the baby has a cystic hygroma---- essentially it's another cyst coming out of the back of the baby's neck.
The doctors and staff were wonderful in making referrals. We will be set up with the Monarch Program (prenatal hospice) which will take us through the steps of getting through the birth. We still have the option to induce, but after talking about it, Brent and I have decided that God has started this baby's heart and it's His decision as to when it stops, not ours. We believe that God is good and that he has a plan- whether it's for our baby to live or whether it's for us to grow stronger as a couple.
Being told that your child will die within minutes of being born is life altering. We made a decision that day that we would not give up hope of being able to meet our little baby. We still didn't know if she was a boy or a girl. (The lack of amniotic fluid made ultrasounds harder to decipher) We were again given the option of inducing labor from the neonatologist. His words were "Go home, check your calendar, decide on a day and we'll induce." I told him that it wasn't my decision to decide the day my child would die.