Friday, July 03, 2009

VCFS Newborn Screening

There's thought right now amongst those who have some say in these matters about including VCFS in the screening all newborns receive in the hospital. Our family received notice about a survey being done of parents, requesting input on the change.

I knew my viewpoint would be vastly different from the rest of the parents and the people agitating for the change, so I called and volunteered to be interviewed.

My reasons against including VCFS as part of the standard screening:

1. VCFS is a syndrome, which means it includes many different combinations of characteristics. No child will have all (or even most) of the characteristics. There is no sense in testing for each and every problem, and worrying about each and every possible defect. Wait until there is a problem that manifests itself, and then resolve it.

2. Early diagnosis (as in, the first week of life) puts a label on the child which is hard to see past. I occasionally see articles in support group newsletters which encourage the parents to see the child [hold onto your hats!] as a CHILD, as a PERSON, as a HUMAN BEING, instead of seeing the child as a problem to be fixed. Well, did it ever occur to the medical community that THEIR attitude contributed to this attitude in so many parents???

2b. Furthermore, early diagnosis makes it easier to focus on the problems to be fixed or the birth defects to be remedied rather than focusing on the child's strengths and good qualities. What's so bad about getting to know the child as a person first, and then later receiving the diagnosis?

3. Catching the heart defect in the first day or so will likely result in a heart surgery right away. For many families, this has created a feeding disorder in the child that is overcome only with years of therapy and hard work. Waiting a few weeks to repair the heart gives the baby a chance to experience eating in a normal way at the time of life a kid needs to learn that!

4. Beginning the rounds of surgeries and medical testing immediately doesn't give the mother time to recuperate from childbirth. Families need time to rest and bond and just be together after the birth of a baby. This is important on so many levels. If this can be done without endangering the child's life, then delving into medical issues (assuming those issues can wait a couple of weeks or a couple of months) will interfere with something that we ought not be trifling with. Family relationships and that bonding with a newborn is something we usually take for granted. But when we mess with it for the sake of using our medical knowledge as soon as possible, we create new and different troubles.


  1. Your post contains so much common sense! In hospitals, medical concerns always trump personal ones. But in cases like you're writing about, where the medical urgency isn't there, delving into solving all the medical problems ASAP could have some bad effects on the child's development.

    There must be somewhere you can share this that would give new parents some perspective. Glad you chose to be interviewed; hope they listen to what you have to say.

  2. I can not DISAGREE with you more. As a parent of an adult child with vcfs, it would have saved my family a tremendous amount of pain and agony had we known what we were up against. Of course the obvious medical issues were addressed as soon as they were found (he was born with a heart defect). But there were underlying health issues that did not present themselves until he reached puberty such as hypoparathyroidism which affects the body's ablity to maintain calcium which has a tremendous affect on brain and bone development. Not to mention the learning disablities, fighting with the schools to get the services he needed and the mental issues that left us feeling like we were bad parents because no matter what we did, nothing worked to control the crazy behaviour. At least if we had the known, we could have planned accordingly for his future and perhaps made his life a little easier than it has been. Knowledge is power - don't let anyone take that from you.

  3. Jeanne says "knowledge is power." IF that is true, and IF we desire power, then she is right. Hers is the prevailing opinion in society today. But sometimes there are some matters where knowledge harms. The problem is figuring out when it harms and when it helps.

  4. Jeanne, I also want to say that I know what you're talking about with regard to wondering what you're doing wrong as a parent. When my kid couldn't keep the bed dry, couldn't talk, got sick all the time, and her teeth were rotting out of her head, it was nice when she was 5 to have somebody link those together for me so that I knew it was part of her genetic deletion. I also see some of the problems that the diagnosis introduced into our life. But at the same time, it solved other problems.

    What I'm objecting to is starting the child's life, from the very first week, with the knowledge of problems that might arise. When we're trying to solve the problems that have already appeared, and get a diagnosis, that is a very different thing from anticipating problems that may not even arise. I mean, hey, look at how they have to tell parents all the time about how that list of characteristics is so huge, and no kid has all of them, and most kids only have a few. But it's nevertheless a common panic to see all the things that could go wrong with your kid, staring you in the face, on a piece of paper that's supposed to be all scientific and medical. How much would it hurt to not know those things for a year or two or three?

  5. If you don't know about a condition, you can't do anything about the cause. I would rather know.

    We do need make sure we treat our new lives as children that need our help, rather than as problems themselves.

    Everyone is a sinner. Everyone is going to die. What matters is what we do with the lives that God has given us.