One-eyed baby in Chennai, India: update (link to "graphic" photos)

Boing Boing ^ | Aug, 10, 2006 | Scott Carney

[Scarchin]

snip - The child was diagnosed with a rare chromosomal disorder, known as cyclopia. She was born with a single eye in the center of her forehead, no nose and her brain fused into a single hemisphere. With such severe deformities, it was a miracle that the girl survived even a few minutes after delivery. Yet now, 11 days later, she has lived significantly longer than other cyclopean cases.-Snip

[TightyRighty]

I saw a show not to long ago about Julianna, a baby born with Treacher Collins. She was born with drastic facial disformities - even worse than this baby. And yet at a year or so old she was just as happy as any other kid playing on a swingset. Many parents in this situation would have aborted. I saw your post and I thought of her. You're dad phrased it so well and I'm going to remember what he said should my kids ask me the same question.

Here's a pic of Julianna with her sister.

[dandelion]

Perhaps you need to be the one of us whom would have deemed "tragic" to understand where faith truly comes from...

from the mountaintop, everthing seems so far down, so far away. You are afraid of the valley, and you are afraid that someday you may have to walk in it. Even though you may have entered the shadow, the world of the valley is too far below you to comprehend it. You fear it, and it makes you wonder how a God of the mountaintops could have ever made something as fearful and dark as the valley.

But from the valley, everything looks up. So too it is with us; we look up, and we are not afraid of the mountaintop. For God is with us in the valley, in the shadow, even when we cannot see a way out. And we know that if God is with us in the valley, then God is everywhere. In the dark, God's presence shines all the brighter...

I have been through the valley of the shadow of death. God was with me. Believe me, for I was afraid - and yet, God was there. I had moments of doubt - and yet, God was real. I was rejected - and yet, I never was unloved.

I have never plumbed the depths of the valley, nor have I walked to the highest reaches of the mountaintops. But I will fear no evil, for God is with me.

When you go to the valley, you will see Him there, with you, too... then you will understand. Life is not the mountaintop, or the valley; it is the journey, and God goes with us through it all. God is there in the hospital, holding the hand of the baby on the table. You do not see Him -

but the baby does.

[paulat]

TWTX...I hope that's the case! Sorry you had to go through such pain! I was just touched by the baby's pic...and I know she doesn't have a long time.

[beyond the sea]

I love your post.

I have to say ......... I feel for you too. It's people like you, with so much sensitivity for all of life, including the unhappiness and cruelty of life, who hurt. You are so good.

Trust me ....... I know.

****

Starry starry night

paint your palette blue and grey

look out on a summer's day

with eyes that know the darkness in my soul.

Shadows on the hills

sketch the trees and the daffodils

catch the breeze and the winter chills

in colors on the snowy linen land.

And now I understand what you tried to say to me

how you suffered for your sanity

how you tried to set them free.

They would not listen

they did not know how

perhaps they'll listen now.

Starry starry night

flaming flowers that brightly blaze

swirling clouds in violet haze reflect in

Vincent's eyes of China blue.

Colors changing hue

morning fields of amber grain

weathered faces lined in pain

are soothed beneath the artist's loving hand.

And now I understand what you tried to say to me

how you suffered for your sanity

how you tried to set them free.

perhaps they'll listen now.

For they could not love you

but still your love was true

And when no hope was left in sight on that starry starry night.

You took your life as lovers often do;

But I could have told you Vincent

this world was never meant for one as beautiful as you.

****

Vincent ........... Don McLean

[beyond the sea]

good hearts you have

[paulat]

All I want to know is that this little one was swaddled...felt the comfort of being held...I don't see that in these pics.

[hocndoc]

I took care of a little girl with a similar, although not so serious, microencephalic condition in residency. She had to be tube fed, because her nose wasn't open to her nasopharynx or throat. She couldn't breathe and suck from a nipple at the same time. She lived in the Neonatal Intensive Care Unit for a little over a week, I think.

I remember that she had a pixy-ish quality and that it was easy to fall in love with her.

I'm not sure what I think about the story and the possible use of a known teratogen, though.

And yes, I'd have given birth. Any woman who is pregnant will inevitably give birth. The only question is whether she will give birth after/while someone deliberately causes the death of the child.

[hocndoc]

The story implies that the mother took a teratogen, possibly intentionally and as part of a drug study.

For God's reasons, we can't expect to always know and understand the ways of the Creator of the Universe. I used to remind my kids that the ants couldn't understand why I dug up a flower bed, either.

Or, from the Author:

Job 38:1 Then the LORD answered Job out of the whirlwind, and said,
Job 38:2 Who is this that darkeneth counsel by words without knowledge?
Job 38:3 Gird up now thy loins like a man; for I will demand of thee, and answer thou me.
Job 38:4 Where wast thou when I laid the foundations of the earth? declare, if thou hast understanding.
Job 38:5 Who hath laid the measures thereof, if thou knowest? or who hath stretched the line upon it?
Job 38:6 Whereupon are the foundations thereof fastened? or who laid the corner stone thereof;
Job 38:7 When the morning stars sang together, and all the sons of God shouted for joy?
Job 38:8 Or who shut up the sea with doors, when it broke forth, as if it had issued out of the womb?
Job 38:9 When I made the cloud the garment thereof, and thick darkness a swaddling band for it,
Job 38:10 And broke up for it my decreed place, and set bars and doors,
Job 38:11 And said, Hitherto shalt thou come, but no further: and here shall thy proud waves be stayed?
Job 38:12 Hast thou commanded the morning since thy days; and caused the dayspring to know his place;
Job 38:13 That it might take hold of the ends of the earth, that the wicked might be shaken out of it?
Job 38:14 It is turned as clay to the seal; and they stand as a garment.
Job 38:15 And from the wicked their light is withheld, and the high arm shall be broken.
Job 38:16 Hast thou entered into the springs of the sea? or hast thou walked in the search of the depth?
Job 38:17 Have the gates of death been opened unto thee? or hast thou seen the doors of the shadow of death?
Job 38:18 Hast thou perceived the breadth of the earth? declare if thou knowest it all.
Job 38:19 Where is the way where light dwelleth? and as for darkness, where is the place thereof,
Job 38:20 That thou shouldest take it to the bound thereof, and that thou shouldest know the paths to the house thereof?
Job 38:21 Knowest thou it, because thou wast then born? or because the number of thy days is great?
Job 38:22 Hast thou entered into the treasures of the snow? or hast thou seen the treasures of the hail,
Job 38:23 Which I have reserved against the time of trouble, against the day of battle and war?
Job 38:24 By what way is the light parted, which scattereth the east wind upon the earth?
Job 38:25 Who hath divided a watercourse for the overflowing of waters, or a way for the lightning of thunder;
Job 38:26 To cause it to rain on the earth, where no man is; on the wilderness, wherein there is no man;
Job 38:27 To satisfy the desolate and waste ground; and to cause the bud of the tender herb to spring forth?
Job 38:28 Hath the rain a father? or who hath begotten the drops of dew?
Job 38:29 Out of whose womb came the ice? and the hoary frost of heaven, who hath engendered it?
Job 38:30 The waters are hid as with a stone, and the face of the deep is frozen.
Job 38:31 Canst thou bind the sweet influences of Pleiades, or loose the bands of Orion?
Job 38:32 Canst thou bring forth Mazzaroth in his season? or canst thou guide Arcturus with his sons?
Job 38:33 Knowest thou the ordinances of heaven? canst thou set the dominion thereof in the earth?
Job 38:34 Canst thou lift up thy voice to the clouds, that abundance of waters may cover thee?
Job 38:35 Canst thou send lightnings, that they may go, and say unto thee, Here we are?
Job 38:36 Who hath put wisdom in the inward parts? or who hath given understanding to the heart?
Job 38:37 Who can number the clouds in wisdom? or who can stay the bottles of heaven,
Job 38:38 When the dust groweth into hardness, and the clods cleave fast together?
Job 38:39 Wilt thou hunt the prey for the lion? or fill the appetite of the young lions,
Job 38:40 When they couch in their dens, and abide in the covert to lie in wait?
Job 38:41 Who provideth for the raven his food? when his young ones cry unto God, they wander for lack of meat.

[beyond the sea]

For God's reasons, we can't expect to always know and understand the ways of the Creator of the Universe. I used to remind my kids that the ants couldn't understand why I dug up a flower bed, either.

Excuse me for saying this, but that is one poor analogy.

I know you are are not suggesting that you are God or "The Creator", but it sure reads like that.

****

And, by the way, how do you know that the ants didn't know why you dug up the flower bed?

Maybe you are God.

;-)

[beyond the sea]

All I want to know is that this little one was swaddled...felt the comfort of being held.

I am a nearly 60 year old male ........... and I know what you are saying about the comfort of being held.

That picture of that little girl on that flat surface, no protection on the sides ...... all alone breaks my heart.

I was outside watering the plants in my nursery the past hour or so........... and I could not get that picture out of my mind.

Sometimes I wish I were different and did not feel these things so much.

[Aquinasfan]

I did not find the photos disturbing.

Sad, but not disturbing. What's truly disturbing is the fate of 1.3 million unborn American babies each year.

[Aquinasfan]

I know you mean well, but why do we have to pray at all that someone exercise human compassion toward that infant? Why does God do that to helpless babies?

Certainly God allows this to happen, but He doesn't will it to happen. Otherwise, God would will evil.

This is the best, reasonably brief, treatment of the problem of evil that I've ever read.

The short answer is to look at the Cross. God, the Creator and Sustainer of the universe, humbled Himself, taking on human form, to suffer and die for our salvation. Why does God allow this baby to suffer? Why did He allow Himself to suffer?

If He doesn't, you certainly can't chalk such a catastrophic birth defect up to some human's free will.

In a sense we can, since Creation fell as mankind fell. (See the link above for a full treatment of this question).

[arasina]

I did not find the photos disturbing. I saw a human being deserving of love and life. I thought I'd post this to spur discussion. Would you have given birth?

A friend of mine's wife carried their brainless baby for 9 months. They knew in the second trimester that there were serious problems. They named her and had a private memorial service and burial.

Did you notice this in the Wired article?

The report states the child's parents turned to an unnamed fertility clinic after failing to have a child after six years of marriage. The treatment the mother received is unknown, but it appeared to work as she soon became pregnant. Then, late in her third trimester, she had her first ultrasound and it showed the child had serious problems. Too late to abort, she was rushed to the hospital for an induced labor.

Perhaps her brief life will teach meddling fertility doctors something about what it is they are actually doing.

[FarmerW]

I noticed they say they induced labor. I wonder the medical reason for doing that.

[reagan_fanatic]

That photo is so deeply disturbing on so many levels. I just wish I could be there to hold her and let her know she's not alone. As the Father of a soon-to-be one year-old girl, it breaks my heart to see this.

May God be with her in spirit and comfort her tiny soul.

[Scarchin]

My purpose was to discuss abortion. In the US this child would most likely have been killed in the womb.

Often when discussion abortion hypothetical examples are used. This is one of those examples brought to life.

[birddog]

I had twin boys 4 years ago. David was normal and health and his brother Matthew had congenital defects. At our first ultrasound we were told he had a 50/50 change of living till birth. We were asked if we wanted to abort him and we said no way. Because he was so underdeveloped (defect effected his lungs, kidneys, lower GI and incomplete spine) and would not live outside the womb, we told the Dr. that they were not to recicite beyond a little oxygen. No needles, no tubes - I didn't not him to feel pain in his last minutes with me. He did not even take one breath and died 20-30 minutes after birth, wrapped in a blanket in my husband's arms. Then he went right home to God.

We kept him in the recovery room with me and my mom, mother in law and the rest of the family were able to hold him for awhile and say goodbye.
Tell your kids that the sadness will lessen as the years go by. David and Matthew's birthday is a little bitter sweet, but it has gotten easier with time.

[CindyDawg]

Christians have "whys" too and I have been known to be far from chirper at times. During those times however, we are probably closer to God, than ever though, praying and asking questions. Accepting His will be done , knowing that he knows things that we don't, and that he can use bad for good, can be a struggle but if you can get there, you will know peace. I was serious that in the end all will be well with this child but that she has a purpose now. What is it? I don't know. Maybe , it is to touch someone's heart at that hospital that seems rather cold. Maybe it is to touch the heart of that reporter that seems to be drawn towards her but by his pictures almost afraid to get too close. Maybe it is for us, right here that see her, to touch our hearts in some special way? Lot's of maybes. We don't know but there is a calmness, in trusting that the Lord is watching over this baby.

[Wolfstar]

Little Ella Grace would have been a year old this past July. She was buried on my birthday.

So tragic. My heart goes out to you and your family.

[Wolfstar]

When God created the world, He did not intend things to work this way, but situations like this happen everyday in a fallen world. Human beings will never be able to correct this character defect on their own.

I mean absolutely no disrespect for your religious point of view. Having been raised a Roman Catholic, I understand your point of view. But especially as regards your point I quoted above, I reject it totally. That child's tragic birth defect is not the fault of a "fallen" humanity. The fact that the photo shows her lying alone on that table is the fault of uncaring human beings who are both repulsed by her condition and not only expect her to die, but who wish to hasten it by withholding care.