Hello,
As people have begun to find out about Owen, the outpouring of support has been overwhelming. Until you go through something like this, you could never know how much it truly helps to have people standing beside you. Every time we hear that someone wishes us well or that someone is praying for us – it makes us a little bit stronger.
There is nothing new to report, but I wanted to answer a few question that people have. The main question seems to be, “How was this not caught earlier?” As best as the doctors can tell, the discrepancy in the growth was not noticeable until after my 20 week ultrasound. As far as that ultrasound showed, everything was progressing normally. As for any other indicators, there was really nothing that could have been caught by a routine doctor visit. Even all the test they do, the strep B test, the cultures, the triple screen, would not have revealed that Owen has lethal skeletal dysplasia. It was however, the standard practice of measuring my belly every week that ultimately uncovered the problem before he was born. Between my 36th and 37th week my belly grew 3 centimeters – a substantial growth in pregnancy terms. For this reason, an ultrasound was ordered for my 38th week. At the time, I was thinking that this little guy was getting ready to make an early appearance. I now know that it was due to excess amniotic fluid, a sign that something was wrong.
We don’t blame our doctors for not catching this. I was not a high risk pregnancy, all my tests were normal, his heartbeat was always strong and he was constantly moving. There was nothing that could have indicated that a healthy 29 year old with no risk factors may be carrying a baby with lethal skeletal dysplasia. Even beyond that, there is nothing that could have been done had the condition had been caught.
Another big curiosity is about the disease itself. Skeletal dysplasia is a genetic disorder that was caused one of 2 ways. It was either the spontaneous alteration of a gene or a combination of 2 recessive genes that caused the disorder. At this point, the doctors do not know which category we fall into. Once Owen is born, they will do genetic testing on him as well as both Dan and I to determine what may have happened. Sounds a little like a science fiction movie doesn’t it? What the doctors at U of M did tell us was that the risk of us both having the recessive gene is low and that even if we did both have it, the risk of having another child with lethal skeletal dysplasia is very low. That being said, our faith that percentages are on our side has been somewhat shaken.
Skeletal dyplasia itself can also be divided up into 2 categories, lethal and non-lethal. Owen obviously has the lethal form. There are over 200 types of general skeletal dysplasia with only 9 of them being the lethal. There was a 1 in 10,000 chance that Owen would be born with this condition. Owen’s form of skeletal dysplasia effects the growth of bones and in particular the legs, arms and rib cage. In Owen’s case, his rib cage is what causes his condition to be so dire. The size of his chest cavity limited the growth of his lungs. He will not have the lung capacity to survive on his own outside the womb.
With all the grim statistics, we still have some hope. As I mentioned in my 1st email, the doctors said that Owen seemed to have more lung tissue than most babies with his condition. This means that they fully expect him to live for at least a few hours. We will spend all of that time loving him, holding him & taking pictures of his sweet face. Tuesday will be a very bittersweet day for Dan and I. We are very excited to finally meet the baby that we’ve so eagerly been awaiting but we will be incredibly sad to say goodbye to him. That being said, we are still praying for a miracle and hope that everyone who reads this will do the same. Once again, thank you so much for the beautiful words of encouragement. We will send pictures of Owen and more information after Tuesday.
We love you all!
Cat and Dan
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