Today Dr Yang called Bonnie, and they talked for a few minutes. Flynn's case is indeed serious, but they definitely want to talk to us and take a look at him through ultrasound and echocardiogram. We will be there Thursday.
It turns out that the two babies who were born after this technique was used were both born with normal sized lungs. Hearing that gave me some hope that there might be a way through all this. It's hard to imagine right now, and I try to accept whatever might happen and not think about possibilities. We are where we are, and nowhere else.
But maybe.
Tuesday, August 31, 2010
Monday, August 30, 2010
Amnio
Flynn's initial amniotic results came back today. He is a boy (heh!) and he does not have Down's or the trisomies. We will be going to St Louis on Thursday.
Sunday, August 29, 2010
Happy Accidents
Life is what happens to you when you are busy making other plans, isn't what they say? A long series of happy accidents.
So Flynn was conceived. I wanted another child, and B. wasn't sure she wanted one just now. We have a beautiful daughter, S., who's just less than two and a half years old. Flynn came by in the usual way, though less expected than Sparrow had been: but no less wanted.
So he grew and he grew and we went to the doctor and so a brilliant little light flashing in the dark, the flicker of his tiny heart in the ultrasound. All seemed quite well.
Then we had the 20-week ultrasound. The technician thought the heart was a little far to the left, and the doctor agreed. There were three possibilities. His heart could just be set a little far left in the chest, but that was a little unlikely. Second, he could have a CCAM, a congenital cystic adenomatoid malformation, a cystic piece of abnormal lung tissue. This can be repaired in many cases by removal after birth, sometime during the first year of life.
The third possibility was CDH, congenital diaphragmatic hernia. This was the worst diagnosis. It is caused by part (or even all) of the diaphragm not closing correctly, allowing organs that usually lie below it to enter into the upper chest cavity. The most common is Bochdalek hernia, where stomach, intestines, liver, or spleen can escape into the left side of the chest cavity. Rarer is the Morgagni hernia, where the liver or sometimes intestines move into the right side of the chest. Dr P felt based on the density of the tissue pushing the heart to the left that if were anything abnormal it was probably a CCAM. Naturally we were unsettled by this. Who wants their child to have surgery ever, much less in the first year of life.
We went back for a second round of scans in three weeks. Dr. P studied and studied what he was looking at for the longest time, but decided in the end that we needed an MRI to accurately diagnose what was going on. Flynn grew two weeks more, a strong and active kicker.
B. had an uncomfortable time of it in the MRI machine, but soldiered through. Then, just as I was telling her what a strong and good person she was, we got the phone call.
It was CDH.
So now we are learning what to do. CDH has a 50% survival rate nationally. We are fortunate in that there are very good hospitals in the region for children, such as Children's Mercy in Kansas City and Cardinal Glennon Children's Medical Center in St Louis. Glennon, in fact, has a cutting edge procedure where a slow-dissolving gel placed in the trachea. This prevents the fetus from swallowing: instead the fluid builds in the lungs and helps expand them. Obviously the lungs cannot develop properly when they have to compete for space with other organs, and poorly developed lungs can lead to death or extended NICU stays.
So we had an amnio, to see if Flynn has other genetic issues that reduce his chances, and we are going to go to Glennon and confer with them to see if they believe that this procedure could benefit him.
Life's a strange and tricky thing. It is all accident, isn't it? once you think about it. We hope, at the very least, that we can help someone else, through happy accident, if nothing else.
So Flynn was conceived. I wanted another child, and B. wasn't sure she wanted one just now. We have a beautiful daughter, S., who's just less than two and a half years old. Flynn came by in the usual way, though less expected than Sparrow had been: but no less wanted.
So he grew and he grew and we went to the doctor and so a brilliant little light flashing in the dark, the flicker of his tiny heart in the ultrasound. All seemed quite well.
Then we had the 20-week ultrasound. The technician thought the heart was a little far to the left, and the doctor agreed. There were three possibilities. His heart could just be set a little far left in the chest, but that was a little unlikely. Second, he could have a CCAM, a congenital cystic adenomatoid malformation, a cystic piece of abnormal lung tissue. This can be repaired in many cases by removal after birth, sometime during the first year of life.
The third possibility was CDH, congenital diaphragmatic hernia. This was the worst diagnosis. It is caused by part (or even all) of the diaphragm not closing correctly, allowing organs that usually lie below it to enter into the upper chest cavity. The most common is Bochdalek hernia, where stomach, intestines, liver, or spleen can escape into the left side of the chest cavity. Rarer is the Morgagni hernia, where the liver or sometimes intestines move into the right side of the chest. Dr P felt based on the density of the tissue pushing the heart to the left that if were anything abnormal it was probably a CCAM. Naturally we were unsettled by this. Who wants their child to have surgery ever, much less in the first year of life.
We went back for a second round of scans in three weeks. Dr. P studied and studied what he was looking at for the longest time, but decided in the end that we needed an MRI to accurately diagnose what was going on. Flynn grew two weeks more, a strong and active kicker.
B. had an uncomfortable time of it in the MRI machine, but soldiered through. Then, just as I was telling her what a strong and good person she was, we got the phone call.
It was CDH.
So now we are learning what to do. CDH has a 50% survival rate nationally. We are fortunate in that there are very good hospitals in the region for children, such as Children's Mercy in Kansas City and Cardinal Glennon Children's Medical Center in St Louis. Glennon, in fact, has a cutting edge procedure where a slow-dissolving gel placed in the trachea. This prevents the fetus from swallowing: instead the fluid builds in the lungs and helps expand them. Obviously the lungs cannot develop properly when they have to compete for space with other organs, and poorly developed lungs can lead to death or extended NICU stays.
So we had an amnio, to see if Flynn has other genetic issues that reduce his chances, and we are going to go to Glennon and confer with them to see if they believe that this procedure could benefit him.
Life's a strange and tricky thing. It is all accident, isn't it? once you think about it. We hope, at the very least, that we can help someone else, through happy accident, if nothing else.
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