In the beginning...
On January 29th, 2013, we went for our routine 19 week sonogram and hoped for all good news. We had already done the NT scan at 12 weeks and discovered that it was (most likely) a boy. All testing so far had shown that he looked healthy. Brian and I knew to be cautious because just a year before we lost our daughter, Angie, to anencephaly, a fatal neural tube defect. Our doctor, a maternal fetal specialist, assured us that his baby did not have anencephaly and we were relieved. He said the feet look great and it's still a boy! Hooray! And then he said the stomach was up next to the heart. Wait, what? He said its called congenital diaphragmatic hernia and he assured us they could fix it. He printed out a chapter from one of his books and immediately sent us across the hall to the pediatric heart specialists. He thought there might be something wrong with the heart as congenital heart defects are common with CDH. So we walked over there in a daze and filled out paperwork in shock.
This wasn't supposed to happen, we had such an easy time with Nathan, our soon to be 3 year old, and they assured us that anencephaly was just a fluke. This baby was supposed to be ok, supposed to help heal the wounds of losing Angie. We want so much for Nathan to have a sibling to grow up with, but we are blessed just to have him.
This wasn't supposed to happen, we had such an easy time with Nathan, our soon to be 3 year old, and they assured us that anencephaly was just a fluke. This baby was supposed to be ok, supposed to help heal the wounds of losing Angie. We want so much for Nathan to have a sibling to grow up with, but we are blessed just to have him.
I layed down on yet another table and the nice doctor did an echocardiagram, where they look at the fetal heart. The baby wasn't in a good position but they thought that the main arteries might be switched. I watched him move around on the screen and felt him kick. He looked perfect to me. They couldn't see very well so we were instructed to come back the next day.
We headed down to our next scheduled appointment with my OB-GYN and cried in her office. She said she was shocked as well, this wasn't related at all to anencephaly. She said we could get an amnio to test for chromosomal problems and we decided that night to get that procedure done the next day.
That night we read a lot and discovered that CDH has a 50% survival rate. Some hospitals will say they have a higher rate, but they may not count babies born stillborn or with other congenital problems. How could something like this be happening again?
The next day we went back to the heart specialists and two doctors looked closely and decided nothing was wrong. The heart was pushed to the right side because of all the other organs, but it looked great. Big relief! We headed over to the maternal fetal specialist and had the amnio done. This is not a fun procedure! But we all made it through and I went home to rest.
We scheduled an MRI so they could look more closely at the lungs and other organs that are hard to see on a sonogram. We had to wait until 22 weeks to have that done because he was still so small. So for two weeks we waited and read a lot and tried to focus on Nathan and work. We decided on the name Isaac. It means, "he will laugh" and we really hope this baby will laugh one day. The story of Isaac in the bible is very interesting as well: http://en.wikipedia.org/wiki/Isaac
There are several things they look for in the MRI: location of the liver and size of the lungs. They look to see if the liver is up in the chest cavity. If more than 20% of the liver is "up", the survival rate is generally lower. If the lung to head ratio is less than 1, the survival rate is generally lower as well. However, there is a lot of debate about these two indicators because a lot of the time, you don't know how well the baby will do until he or she is born. Sometimes babies that they thought would not make it, do very well and thrive. And sometimes the babies that they thought would be just fine, don't make it. Also, the lung to head ratio can change based on who is doing the measurement and when during pregnancy it is being done. This is why they say 50%, because they just don't know.
We went to the MRI last Thursday the 21st. I had never had one before, but it wasn't as bad as I thought it would be. But let me say, it is hard to breathe normally when you're in a small metal tube with loud noises going on around you! I could feel Isaac moving around and kicking and I tried to be calm for him. Afterwards we met with the fetal radiologist, Dr. Twickler, who showed us the MRI images. She said that the brain and spine all looked great. The stomach is indeed in the chest cavity, along with some intestines and a portion of the liver. They were still doing calculations on the lung to head ratio and the percent of liver but we should get those the next day when we went back to meet with Dr. Weiss, the maternal fetal specialist. I knew that the liver up was bad, but we both prayed that it would be less than 20%.
The next day we went to see Dr. Weiss and he said that the lung to head ration was 1.14, which is better than 1, but not as good as 1.4 where they like to see it. He said the liver up percent was 16%. Neither number is great, neither indicates a lower than 50% chance. We are still waiting on the microarray results which should come early this week.
That night we read a lot and discovered that CDH has a 50% survival rate. Some hospitals will say they have a higher rate, but they may not count babies born stillborn or with other congenital problems. How could something like this be happening again?
The next day we went back to the heart specialists and two doctors looked closely and decided nothing was wrong. The heart was pushed to the right side because of all the other organs, but it looked great. Big relief! We headed over to the maternal fetal specialist and had the amnio done. This is not a fun procedure! But we all made it through and I went home to rest.
We scheduled an MRI so they could look more closely at the lungs and other organs that are hard to see on a sonogram. We had to wait until 22 weeks to have that done because he was still so small. So for two weeks we waited and read a lot and tried to focus on Nathan and work. We decided on the name Isaac. It means, "he will laugh" and we really hope this baby will laugh one day. The story of Isaac in the bible is very interesting as well: http://en.wikipedia.org/wiki/Isaac
There are several things they look for in the MRI: location of the liver and size of the lungs. They look to see if the liver is up in the chest cavity. If more than 20% of the liver is "up", the survival rate is generally lower. If the lung to head ratio is less than 1, the survival rate is generally lower as well. However, there is a lot of debate about these two indicators because a lot of the time, you don't know how well the baby will do until he or she is born. Sometimes babies that they thought would not make it, do very well and thrive. And sometimes the babies that they thought would be just fine, don't make it. Also, the lung to head ratio can change based on who is doing the measurement and when during pregnancy it is being done. This is why they say 50%, because they just don't know.
We went to the MRI last Thursday the 21st. I had never had one before, but it wasn't as bad as I thought it would be. But let me say, it is hard to breathe normally when you're in a small metal tube with loud noises going on around you! I could feel Isaac moving around and kicking and I tried to be calm for him. Afterwards we met with the fetal radiologist, Dr. Twickler, who showed us the MRI images. She said that the brain and spine all looked great. The stomach is indeed in the chest cavity, along with some intestines and a portion of the liver. They were still doing calculations on the lung to head ratio and the percent of liver but we should get those the next day when we went back to meet with Dr. Weiss, the maternal fetal specialist. I knew that the liver up was bad, but we both prayed that it would be less than 20%.
The next day we went to see Dr. Weiss and he said that the lung to head ration was 1.14, which is better than 1, but not as good as 1.4 where they like to see it. He said the liver up percent was 16%. Neither number is great, neither indicates a lower than 50% chance. We are still waiting on the microarray results which should come early this week.
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