Posted on 06/22/2004 1:30:39 PM PDT by madprof98
Baby Charlotte will be born at a Victorian hospital tomorrow morning. Her parents, Teresa and Mark, have known for six months that she will have only hours to live, but they have decided to go ahead with the pregnancy and the delivery.
They know their daughter, who has anencephaly -- a condition in which the brain does not develop -- cannot live. They are determined she will be born. "This is about love. It's not about some tragic, fatal medical condition. It's about my child," her mother said. Teresa, 27, and Mark, 28, heard the all-too-familiar medical diagnosis of anencephaly 12 weeks into this pregnancy. They knew it was a death sentence for the baby girl they had already named Charlotte Mary.
"We have always liked that name," Teresa said from her home in rural Creswick, near Ballarat.
The couple did not consider an abortion. They said this was not merely because they do not agree with it, but more because they wanted the chance to say hello to their daughter before they have to say goodbye.
So early tomorrow morning, Teresa will have a caesarean delivery and hold, for the briefest and most precious of times, her little girl.
"There is no way to avoid the sad fact that Charlotte cannot live long after birth with this condition," Teresa said.
"But causing her to die earlier will not stop this happening. Causing her to die earlier will only take from us the beautiful experience of knowing and loving her."
The couple say the tragedy is not the fact they know Charlotte will die, the tragedy is that their baby will die.
"It is not nice to know for months beforehand, but it gives us a chance to appreciate a life so brief, and not to miss a moment."
Tomorrow morning, their family will be at the hospital with them: two sets of grandparents, aunts, uncles and cousins as well Charlotte's big sister Cecilia, 6, and her brothers Sebastian, 4, and Elijah, 17 months. The family will sing to Charlotte, read to her, hold her, treasure her.
"There was never any doubt that we would carry her to term," Teresa said. "She is not a mistake. Charlotte is a person made in the image and likeness of God."
Sadly, this is not the first time the family has lost a baby to this condition.
On June 25, 2001, Teresa gave birth to a son with anencephaly. He was diagnosed at 18 weeks and carried to term. Teresa and Mark named him Benedict Oliver. He lived 24 hours.
In that time, the family said they were able to know and love Benedict. "We knew he would die, but we also knew he would be beautiful and that we would love him no matter how long he was with us.
"I don't think I can possibly tell you how beautiful he was, or how sweet he smelled, or how much I wish those hours were frozen in time."
As they will do for Charlotte tomorrow, they spent every precious moment of Benedict's life with him.
"People may wonder 'What's the point?' or pity us for having to continue carrying a child who is not going to live for long," Teresa said.
"Others may think we carried Benedict and Charlotte to term because we don't agree with abortion, because we are Catholic, or because our nephew was carried to term after a fatal diagnosis.
"All of these factors probably played a part in our immediate refusal to terminate, but this is not what it's all about. It's about love. It's about our baby."
Anencephaly is a neural tube defect that occurs in about one out of every 1000 pregnancies. The condition has devastated this family. In 1996, Teresa's sister Clare gave birth to a son, Thomas Walter. She knew early in the pregnancy her son had anencephaly and would die.
"We were all devastated, especially Clare and Tom," Teresa said. "They decided, against some of the advice they were given, to lovingly carry Thomas Walter to term, to cherish him for the short time he would be with them."
That had a profound impact on Teresa and Mark. Thomas Walter lived for 17 hours after birth.
"I really didn't comprehend the whole situation (then). I knew it was the right thing to do," Teresa said. "I didn't question that I would have no other option if the same thing happened to me, but I thought how awful it was to know for over four months that the child you are carrying is unable to live outside your womb."
Teresa said when her nephew was born and she was able to hold him, and see him "as a real person, a precious and unique creation" she realised that there was a lot more to it than ethics.
"We believe the value of Thomas Walter, Benedict and Charlotte cannot be measured by the length of their lives. We don't apply this yardstick to adults, so why should we to babies?
She said Benedict left a lasting impression on her family. "He made us slow down, savour life and treasure our other children even more.
"He made us realise that we cannot control or predict what will happen. And how often are we given the opportunity to really give another person true, unconditional love?
"It is a blessing to experience that kind of pure love."
Teresa and Mark obviously adore children and said they always planned to have at least four.
Mark said he totally supported his wife's commitment to carry Charlotte to term.
"We would love to have more children, and we don't know that this will not happen again, but that is a risk we are prepared to take," he said.
Tomorrow his wife will have her third caesarean delivery. For medical reasons, she may be allowed only one more.
That doesn't deter Teresa. "I hope I am blessed with another child," she said. "Because we have had two children with anencephaly, the risks are higher the next time, but I know I won't be having an early scan to find out the way I did with Charlotte.
"We have known for six months. That has been pretty tough."
Teresa said she wanted to tell Charlotte's story for the love of Charlotte, but also to help other couples in a similar situation.
"We know, from experience, that you have to make decisions in a very short time when your baby has a fatal diagnosis," she said. "You go into shock in the first few weeks. I know I couldn't think straight. This is not a decision you would want to make in haste."
Teresa said someone asked, after Benedict died, whether it was worth it.
"Oh yes. For the chance to hold him, and see him, and love him before letting go. For the chance for our children to see that we would never stop loving them, regardless of their imperfections. For the chance to give him everything we could.
"Love your children, and remember that they each have their own unique mission. Children are always and only a blessing from God, even if they don't stay for long."
How would that work, since they have NO BRAIN? You might as well claim that a head of lettuce feels pain when it's torn to pieces.
I'm talking about letting it die after it's born naturally. Sheesh. Sometimes a question is just a question, without any hidden agenda.
She could, like the mother I know who had a child with this, have an inability to properly metabolize folic acid.
This is Christ's love.
Truog of Harvard and Professor John Fletcher of the University of Virginia, writing in the New England Journal of Medicine in 1989, advocated taking organs with parental consent as soon as the diagnosis of anencephaly is confirmed. They suggested that the babies wouldn't feel pain from the surgery, but remarked that "whether they or even brain-dead patients perceive pain is fundamentally unknowable."
I hope palliative care is the norm for these cases but don't know. Anyone out there?
Sorry, I know what you meant. I just hate to think of anyone justifying an abortion on this baby because it wouldn't feel pain. I know you weren't saying that.
According to Marilyn Shannon, one of the top nutritionists in the Ob/Gyn area ("Fertility, Cycles, and Nutrition"), the only problems with too much Folic Acid occur if the mother is a strict vegetarian. Marilyn's articles are available on the Couple to Couple League website, www.ccli.org.
The correlation with Down Syndrome is *just* a correlation at this point, but it's being researched to see if some causation can be proved.
I think you have to take a really huge amount for it to be "too much". I read recently that for some women who are resistant to it or don't absorb it well, the prescribed amounts in prenatal and multi-vitamins aren't nearly enough to prevent neural tube defects. If a bit too much was dangerous, I'm sure the government wouldn't have recently starting mandating that most processed grain products be laced with it. They'd been resisting that step for years, not on the grounds that it's dangerous itself, but that it masks the symptoms of pernicious anemia (which is much rarer and more curable than neural tube defects). Unless your doctor has somehow identified you as having an unusual hypersensitivy to folic acid, I don't think you should worry about the double dose from prenatal and regular multivitamins.
I thought the Downs Syndrome corrolation was with B-12 before conception.
My nephew felt no pain. However, my sister said that he would wiggle if not being held. They held him except when his picture was being taken, with a darling little hat on so that no one could see that basically his skull was empty and concave.
I knew what you meant.
Maybe that's a different one ... I'll have to look it up, and see about taking B-12 once James starts eating food!
At least the parents are able to feel the warmth of their tiny baby, to caress that skin that is softer than any silk ever spun. The parents will carry those memories with them to their graves and know they did the right thing.
All abortion ever gave me was everlasting anguish.
You just hit this thread to admire my tagline :-). (Kidding, kidding ...)
Yes, and therefore the decision to carry a baby like this to term is clearly for the parents' benefit, not the baby's. Doesn't matter at all to the baby.
Most likely, and I assume that such a metabolic disorder would be genetic in origin, especially since her sister also had an anencephalic baby.
I agree with the poster who suggested it's time for these people to think about going the adoption route. I can guarantee they're not paying the costs of all these pregnancies and deliveries out of their own pockets, and I question whether the public (through tax dollars or increased overall insurance rates) should be subsidizing this couple's repeated rounds of producing anencephalic babies, just so they can feel good about themselves while they cuddle the dying babies for a few hours.
Geez, I'm sure that if they had checked with Kerry's bishop, he would have authorized an abortion. I'm pretty sure that the bishop who covers the places where Senators Kerry and Kennedy live is very pro-abortion. And, since both Senators are very pro-abortion, they could have said a good word to the bishop on behalf of these folks.
We had a woman here in Billings MT, some years ago, who had a baby with this disease. She was told to take the baby home and "let it die" naturally. The docs told her not to feed the baby girl. But, she chose to feed the little thing.
Baby lived for months, seemingly a vegatable. But, the mom decided to drain the fluid from the baby's head. And so against doctor's wishes a shunt was placed in the head and the mom drained it every couple of hours. Guess what? The baby started to "awaken"!!
Turns out that the brain was being smashed by the water, and when the water was drained, the brain grew! The little girl is now about 19 years old and quite normal.
I wish I could remember her name, but I can not. The girl and her mother were on Oprah, about 5 years ago.
That's not necessarily true. Typically a major portion or all of the cerebrum is missing, so the baby is blind, deaf, and unconscious. However, the brain stem is present so some nervous function is present. Anencephalic babies may respond to touch and sometimes to sound.
There are days when I can't even look my children in the eyes...because of choices that I made in the 1980s. Statistically, I have several decades full of regret ahead of me. Would knowing that have changed the decisions I made so many years ago? I cannot say. I was selfish and cowardly, period. I was also completely uninformed about what the future had in store for me.
"I question whether the public (through tax dollars or increased overall insurance rates) should be subsidizing ..."
But don't you think it's up to the insurance companies, or to the public through their representatives, to decide whether a situation is covered? Do you think citizens have an obligation to say, "I'm not going to take Action-X, because that's using tax dollars, or raising insurance rates."?
I think the place to address the public-cost issue is at the legislative level, not at the personal-decision level. As Larry Elder says, "We don't have an immigration problem; we have a socialism problem!"
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