Kevin's Watch

Caring for children with profound developmental disabilities can be difficult and demanding, they note. For children with severe combined neurologic and cognitive impairment who are unable to move without assistance, all the necessities of life — dressing, bathing, transporting — must be provided by caregivers, usually parents, and these tasks become increasing difficult, if not impossible, as the child increases in size.

"Achieving permanent growth attenuation while the child is still young and of manageable size would remove one of the major obstacles to family care and might extend the time that parents with the ability, resources, and inclination to care for their child at home might be able to do so," Gunther and Diekema write.

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I was a little shocked by this at first, when it mentioned the things that had been done to the girl, but as I read further, and they mentioned something of her condition... I'm finding it hard to see the wrong in this. There's something unsettling about the whole thing, but I really can't condemn it.

That poor girl. I admire the family for the love they clearly have for their child. But I am conflicted. What they are doing seems so wrong. But what are their choices?

Is there a 'slippery slope' concern here. At what point to the 'bright yellow lines' (apparently in this case) fade ... and make choices less clear cut.

More thoughtful minds than mine will need to answer.

I'm torn about this too. I have a feeling that the conclusions I may make here and now may be totally different if I were facing that same situation.

It seems to me that one's own feelings about the very things that make us human could be at work here. Are we the sum of our flesh, and the electrical currents that animate the biomechanical machine? Or is there more? Do people have "souls"? Is there any kind of existence beyond the physical life? Two people with different views on those subjects could have vastly different feelings about the subject, and the ethics involved. . . or they may agree.

Either way, it is a difficult dicision, fraught with controversy on each side. I truly feel for the parents here. . . it sounds as though the little girl involved has very little (if any) understanding. . . beyond an awareness of her world. I would think that she must be very happy then, to be surrounded by her family. It is the family that would suffer, knowing what could have been, knowing what she is missing. A terribly unfortuante situation, I grant you.

I hesitate to bring this up, but I think I will share it afterall. (Long story to follow!)

Some friends of mine from high school (high school sweethearts) found out that they were pregnant with their second child. During routine testing (ultrasound, I believe) during the first few months of pregnancy, doctors discovered that the baby had spina bifida. For those unfamiliar, this is a birth defect in which the neural tube fails to close completely, leaving the spine exposed and sometimes unformed. The exposure of the spinal cord to the amniotic fluid (and other hazards) often leads children with spina bifida to have decreased functioning (even paralysis) below the point of the exposure.

The doctors and my friends decided that it would be best to do fetal surgery to repair the spinal opening. That is surgery on the fetus while it is in the mother's uterus! While the fetus (a baby girl) was being evaluated for the surgery, it was discovered that she had a rare genetic disorder called Trisomy 18. Because of this and the severity of the birth defects associated with Trisomy 18, doctors decided that it was not a good idea to proceed with the fetal surgery to repair the spina bifida. At this point my friend was 5 months pregnant. Her doctor, who had been very supportive and helpful, suddenly began to push my friend to have an abortion, telling her that her baby would likely not live long after birth anyway. My friend switched doctors. She went through several until she found one willing to support her decision about keeping her baby. The pregnancy progressed, and finally my friend delivered her baby girl. They named her Carleigh. Carleigh had many, many physical defects, including microcephaly (small head size), a heart condition, and respiratory problems--in addition to her spina bifida.

Carleigh was not able to maintain her own breathing when she slept. Her doctors counseled my friends to let Carleigh die on her first day of life. . . to just withhold the treatment that would keep her breathing until she remembered to breathe again on her own. My friend refused. Carleigh was not a well little girl, but my friend wanted her daughter to have as much of a "normal" life as possible. She and her husband obtained the medical equipment necessary to care for Carleigh at home--including alarms that would go off in case Carleigh were to stop breathing and not begin again. Both parents were trained extensively in how to take care of their daughter, and what to do in case of emergencies.

Some people cold not fathom why my friend would spend so much effort and money on this child--especally when it was clear that she would not live very long. But my friend always maintained that Carleigh had a purpose, a reason for coming into their lives.

Though they did the best they could, Carleigh's body could not hold up. She died when she was 5 months old--to the day. When Carleigh died, the entire town (very small--population of 2,000 people) mourned her. Even those who had been skeptical had been touched. Hundreds turned out for the funeral. Carleigh never spoke, never sat up, or rolled over. She did smile, though. And somehow she made a difference in a lot of people's lives. She was born November 8, 1999. I wonder how many more people she could have touched had she lived to turn seven this week.

What was my point in telling Carleigh's story? I guess it was to say that I understand in a way what the child's parents are doing, trying to take care of her the best way that they know how. And ultimately, I don't know what the right answer is. If I am lucky, I may never have to make a decison like the one that those parents had to make.


~Lyr, rambling

~edited for spelling, and correction of terms~

Carleigh's parents are extraordinary people. Truly extraordinary. Please tell them they have my deepest sympathies.

Also, please tell them that I know they did not do what they did so they could hear the rest of what I have to say, but I would like them to hear it anyway. They also have my deepest admiration and gratitude. They give us all an example of what humanity can be. I do not know what I would have done in their place. I likely would have wanted to keep the baby also, but because I feel strongly against abortion. They, on the other hand, did it out of a greater love than I can imagine. Their example is not needed to remind me to love my children as I do, but I hope and intend it to always help me keep a greater perspective about so many things in my children's lives. To think of Caleigh and her parents, and then get upset about any number of faaaaaaaaaaaar less important things...

Aelyria Mireiswen wrote:I hesitate to bring this up, but I think I will share it afterall.

I'm glad you did.

such children and their smiles and the love of their families touch the hearts and souls of the people who know them ... and hear about them ... perhaps that is why they are born ... to show that there is also love in the world.

...wow, that's the most beautiful thing I've ever read on the web! My wife, Tam, was blown away by it-she ran the Newborn ICU at our local hospital for 6 years-and we both had a coniption when we realized Carliegh was born on her birthday!

Thanks, everyone. I wish that Carleigh's site was still up and operating, but it seems that it hasn't been updated lately. I wish you could see her face. Here is a little more information about her, from the fetal spina bifida surgery site.

John and Andrea Williams, Missouri, were scheduled to undergo Fetal Surgery for Spina Bifida at Vanderbilt University in Nashville, Tennessee.

Surgery was going to be performed on Andrea and then unborn daughter, Carleigh, on July 13, 1999, when Carleigh was 22.1 weeks gestation.

Surgery was cancelled, due to a condition revealed by amniocentesis, called Trisomy 18. Even with surgery cancelled, the Fetal Surgery Family continued and still continues to embrace the Williams Family as one of their own.

Carleigh Lauryn Grace was born on November 8, 1999, at 40 weeks gestation, weighing 5 lbs., 3 ozs., and was 18 1/2 inches tall. She had Trisomy 18 and Spina Bifida, as well as numerous other health problems.

Carleigh gained her angel wings on April 8, 2000, at 5 months of age, due to respiratory and heart failure brought on by Trisomy 18.

Carleigh's lesion level was L1/2 to S1/2.

In Carleigh's short time on Earth, she had learned to smile, which always brightened her parents' day. She is sadly missed by her parents and her big brother.

danlo wrote:...wow, that's the most beautiful thing I've ever read on the web! My wife, Tam, was blown away by it-she ran the Newborn ICU at our local hospital for 6 years-and we both had a coniption when we realized Carliegh was born on her birthday!

Happy birthday to your wife, Danlo!

Aelyria
thank you for sharing.