What makes it difficult to get a handle on CDH is that the science is so vague. My problems begin with the simple question: “How common is it?” There’s no clear answer. I’ve seen some websites say 1:2200 babies, some say 1:2500, others 1:3000, or 1:5000. Mind you, these are all medical sites or CDH organization sites. Then you move on to, “What are the odds of survival?” Here there are no clear answers at all, and you finally are left with a muddled 50-50, with the caveat that chances are far better under certain circumstances, such as no other defects in the organs (all though this is common) no trisomy disorders (also common) and so on. Left also vague in some sources is whether terminated pregnancies count among the unsuccessful cases. Is a left sided CDH better than right? Yes. (Maybe.) What are the odds on a right? Your guess is as good as mine; there are so few of them. (How many is few? Pick a smallish percentage written on a card out of a fishbowl. There’s your answer!)
Then there are the small numbers of babies who suffer congenital diaphragmatic hernia. I’d guess, by the ambiguous rates above, that somewhere between 1500 and 2000 babies a year are born with it. Yet the only studies I have seen happen at individual hospitals, who talk about periods of time of twenty years or so when they had forty or fifty cases, “and this is what happened.“ It doesn’t seem much to build a study on.
As if that weren’t enough, much of the research seems to happen in a bubble. Some focus on drugs to grow the lungs, some on a tracheal ligature, some on tracheal occlusion with balloons (are these two things the same? I don’t know!) Our route, tracheal occlusion with gel, doesn’t even come up on the radar except for one or two people who call it controversial; I suppose this is due to the fact that a premature birth would potentially leave a blockage in the trachea. Some hospital studies imply that doing nothing at all is best . . . except when you have babies like Flynn that have no realistic chance of survival.
There seems to be no single voice speaking on the subject. It is as if every source operates out of an alternate universe where all these different things are truly so.
And what’s a realistic chance? Here’s where it gets confusing, as if it weren’t already. Some babies with small hernias and few problems succumb to the disorder; others with large hernias and huge issues survive. How long’s a NICU stay? Six days . . . six weeks . . . six months . . . take your pick. Again, little correlation between that and anything else.
What is the quality of life afterwards? The evidence is mixed. You read parent blog after parent blog and see happy, healthy children. Then you read story after heartbreaking story. The studies ring out with grim warnings of mental disability, cerebral palsy, developmental delay, feeding tubes, breathing issues, a childhood on oxygen. Sometimes these things seem to happen. Often they don’t. Every baby is different.
Every baby is different. There is no rhyme or reason. There is no this is how it will be. Just one answer: given a thousand babies, you will have a thousand outcomes, and no WHY for any of them.
Flynn is strong, a hard kicker, a big baby, who moves around a lot. He has a lot of hair and he looks like his sister and he looks like me. He loves music, and seems curious and playful with the outside. He is a different baby, and his outcome will be different. It’s not for us to know now.
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