Daily Archives: December 3, 2004

The Groningen Protocol

Hugh has several posts (here, here, here and Hugh’s Weekly Standard column) on the Groningen Protocol linking to several other posts on the subject. He was looking for more MSM and blogger coverage of the story. I sent a copy of the Washington Times AP story to Fox to see if they were aware of it. Currently they have one story dated Tuesday, November 30 with two different links and headlines: Dutch Hospital Euthanizing Gravely Ill Babies and Netherlands Hospital Permits Euthanasia for Terminal Newborns.

Hugh’s Weekly Standard column contains the following:

This is either a low point, or a point of no return. The establishment of “independent committees” to dispatch non-consenting humans is nothing but a death penalty committee for innocents. Once begun, it is impossible–simply impossible–to limit the concept with any bright line. Abortion, of course, has always been limited by the physical act of birth, and once out of the womb, only the most extreme “reproductive rights” advocates have argued that the baby’s natural right to live can be compromised by the mother. But now the Netherlands has gone farther–much, much farther. If the “severely retarded” may be killed upon appropriate motion, second, debate, and majority vote, why not the moderately retarded? Why not the mildly retarded? Why not, in fact, anyone the “independent committee” deems as usefully dispatched.

This is what really concerns me. My daughter has a developmental delay, epilepsy and moderate hearing and vision impairments. She weighed 4 pounds 10 ounces at birth, which is small, but her APGAR scores were 9 and 10. She has two genetic anomalies: She has an “extra” gene on one of her 10th chromosome pair and her 19th chromosome has a “ring” in a mosaic pattern. The chromosomes usually look like an eleven (11) two straight lines. On Katie’s 19th chromosome, every other pair looks like a ten (10) instead. One of the pair is a circle instead of a straight line. She is 14 years old now. She doesn’t speak well and uses some sign language to help her “get her message across.” Her 4-year-old brother is leaps and bounds ahead of her in speaking and development. Her 10-year-old brother also passed her up a long, long time ago.

She may have Lennox-Gastaut Syndrome. It is a severe form of epilepsy that usually develops in children between 1 and 8 years old (I took her to a neurologist at 18 months old). Most children with Lennox-Gastaut experience some degree of impaired intellectual functioning or information processing. It may be caused by brain injury, severe brain infections, genetic brain diseases, or developmental malformations of the brain. In some cases, no cause has been found. Prognosis varies, there is no cure. Complete recovery including freedom from seizures and normal development is very unusual.

She can dress herself, feed herself, use the bathroom herself, and watch Barney and Shrek all day long. She likes to color and can copy some letters down. She can sight read some words. When her littlest brother was five weeks old and she was 10 years and 5 weeks old (her littlest brother was born the day before her 10th birthday) she had surgery for a vagus nerve implant. We were hoping that it could help “reprogram” her brain not to seize so often. She’s been on many different medications over the last twelve years. Currently we have her on only one that seems to be working better. Her seizures are not as frequent, or as long. We are lucky that she doesn’t have grand mal seizures. She’ll just suddenly stop and jerk a few times. She can do this while walking and not fall down (atypical absence and myoclonic seizures).

She needs to have weekly occupational, physical and speech therapy. Insurance companies don’t want to cover this though, because the therapies will need to long term. The insurance companies seem to only want to cover, say, physical therapy after a broken bone. Something that won’t take too long to show progress and finally be done. I’ve seen some that limit all three therapies to 30-60 visits total. This would allow her 10-20 weeks of all three therapies.

I was first worried that Hugh was sliding down a slippery slope, but I don’t think he is. Eventually they could do this to children and people older than 12.

Katie is a beautiful, loving child and she will be a beautiful, loving adult. However, she probably won’t be a “productive” adult. She probably won’t be a “normal” woman who has a job, or gets married and has children. She won’t go to college. She will need care for the rest of her life, either with me or with a group home of some kind. I also have to think about her care after I am gone.

Death by committee could decide that she’s “useless” and terminate her. That’s what’s really scary.