What would you do? Siamese Twin moral dilema

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from: http://news6.thdo.bbc.co.uk/hi/english/uk/newsid_909000/909925.stm


As the parents of Siamese twins argue against separation on religious grounds, BBC News Online looks at the uneasy relationship between faith and medical ethics.

Two baby girls joined at the lower abdomen lie entwined in a hospital incubator in Manchester. One must die so the other can live.

Jodie and Mary - false names used by the High Court judge who gave surgeons permission to separate the girls - share a heart and a pair of lungs. Unless the girls are separated, both will die within months.

The ruling to operate was made by Mr Justice Johnson

For their parents, who came to the UK from a remote Eastern European community, the operation is not a question of life or death. It is a test of their faith.

The couple do not want the operation to go ahead because they believe it should be up to God - not the medical team at St Mary's Hospital in Manchester - to decide their daughters' fate.

This belief is an intuitive interpretation of their Roman Catholic faith, that it is wrong to do evil - sanctioning the death of a child - even though it could result in good.

It is the latest case in which medical concerns have come to blows with strongly-held religious beliefs.

If you were the parents, what would you do - and what would your reasoning be?

-- Johnny Canuck (j_canuck@hotmail.com), September 07, 2000


BTW, the last line of the above post was not from the article, rather it was a question posed by me.

-- Johnny Canuck (j_canuck@hotmail.com), September 07, 2000.

Do not operate. If it was meant to live, it will live. If it was meant to die, it will die.

-- (let@it.be), September 07, 2000.

By that logic, no one should ever seek any medical attention whatsoever.

-- Tarzan the Ape Man (tarzan@swingingthroughthejunglewithouta.net), September 07, 2000.

but...can you imaging the life of this surviving twin? Twins have a special bond, and having her twin killed so that she may live will plague and torture this poor child.

If I were the parent, I would be doing some intense praying. I would like to say that I would let The Lord handle this without intervention. But it would be so difficult to make that call if I were immersed in the situation. I do truly grieve for all involved. This is not something that will be easy to live with, no matter how things turn out.

-- cin (cin@=0).cin), September 07, 2000.

I could not possibly play armchair quarterback in this situation. This is a perfect example of why I believe it isn't necessary to form/voice an opinion on "every issue". There are so many issues in which I see no way to honestly formulate opinions without being faced with the situation firsthand.

Thank God I don't face this family's nightmares. There but for the Grace of...

-- Bingo1 (howe9@shentel.net), September 07, 2000.

I would have them separated & hope that one healthy child would be the outcome.

-- richard (richard.dale@onion.com), September 07, 2000.

I must align with Bingo1 on this question. This is an impossibly painful and complex situation with absolutely no good choices for the parents. News stories haved tended to blur over just what sort of physiognamy the "viable" child would have after seperation.

The tendency of physicians (especially surgeons) in this kind of a case is to operate, proclaim victory, feel wonderful about their miraculous "healing" ability and then send the child home and let the family cope with all the fallout in the real world.

I say, let the parents decide which way forward brings a pain they can endure. The rest of us should just stand back in respectful silence.

-- Brian McLaughlin (brianm@ims.com), September 07, 2000.

My youngest daughter was born with a series of heart defects a condition known as Tetrollogy of Fallot. She underwent open heart surgery at nine weeks of age. The surgeon did a complete repair of all the defects. She's now a healthy ten year old.

It was not a tough decision to make. If she didn't have the surgery, she would have died before her 5th birthday. Don't get me wrong here about it not being a tough decision...it was tough. Knowing that she could have died during surgery was one of the most surreal things that ever happened to me in my entire life. We saw it as having no other choice.

-- Peg (too@much.spam), September 07, 2000.

>> My youngest daughter was born with a series of heart defects a condition known as Tetrollogy of Fallot. She underwent open heart surgery at nine weeks of age. The surgeon did a complete repair of all the defects. She's now a healthy ten year old. <<

Not all prognoses are created equal.

My daughter was born with a heart defect known as AV Canal. She underwent open heart surgery at nine weeks of age. The surgeon did a complete repair of the defect. Had the defect not been repaired she would have been dead before her first birthday.

Unfortunately, the heart defect was just one of a cluster of conditions caused by exposure to a virus in the womb. She's now fourteen years old. She is our delight and our despair. She suffers from almost constant seizures, cannot speak, stand, walk, crawl, or feed herself, and requires 24 hour nursing care. The extent of her difficulties only became apparent well after the surgery.

She enriches our lives, but the perpetual pain and grief that come with her ill health are not trifling. My wife and I have gained much in love, patience and compassion. But I often feel like my heart has been tenderized by a mallet - and the process never stops.

My point is, by just reading the news accounts we cannot know nearly enough about the true stuation to judge it. Inevitably, the positive effects of the surgery will be emphasized by the reporters to the near exclusion of any negative possibilities. People hate to think that infants can have anything but a hopeful future.

-- Brian McLaughlin (brianm@ims.com), September 07, 2000.

This story did not have a happy ending.


Twins' Surgery Causes Ethical Questions on Health Care

How far should medicine go to preserve life? At what expense? As politicians wrestle with decisions on health care reform, difficult questions are being raised. Low success rates and huge financial considerations need to be addressed. A medical ethicist, James L. Nelson, said, "It's not necessarily a nasty, money-grubbing attitude to say that hundreds of thousands of dollars may be too much to spend to buy a small chance of life for one individual, when that same money might go toward improving the lives of many more people."

The surgery separating Amy and Angela hold a success rate of less than 1% for one twin's survival. The parents feel the risk is worthwhile.

The Lakebergs have no medical insurance and are depending on Medicaid to cover the costs.

[8/20/93 - Milwaukee Journal]

Conjoined Sisters were Separated; Both Shared One Heart

Seven-week-old Siamese twins, Angela and Amy Lakeberg, were separated on Friday, August 20, 1993, in a 5 1/2 hour surgery at Philadelphia's Children's Hospital. Both babies shared a malformed 6-chamber heart and liver and abdominal tissue.

Chief surgeon, James O'Neill Jr., determined "which twin would live based on anatomy." Angela survived, and sister Amy died two-thirds of the way through the operation. Long-term surival of baby Angela is slim according to O'Neill.

The shared heart would have caused certain death for both had the operation not taken place, doctors said.

[8/21/93 - Milwaukee Journal]

Surviving Twin Improving

Despite doctors' predictions, the surviving Lakeberg siamese twin is improving. Angela Lakeberg has gained two pounds in the past two weeks and now weighs 10 pounds, 5 ounces. The child "can now breathe on her own for short periods." In addition, intravenous feeding has now been replaced with a gastrointestinal tube enabling food to go directly to her stomach.

Children's Hospital of Philadelphia has upgraded Angela from critical to serious condition.

[9/22/93 - Green Bay Press Gazette]

Siamese Twin who Shared Heart Defies Odds, Reaches Milestone

Siamese twin, Angela Lakeberg, has defied the odds since the risky operation that separated her from her sister, Amy. (Amy died following the 5-1/2 hour procedure performed in August.) On Wednesday, December 29th, Angela turned six months old. She has lived "longer than any twin who shared a heart and liver."

The baby breathes with a respirator and is growing although she is smaller than normal. Angela now weighs 11 3/4 lbs.

Attempts to get her off the ventilator in early December were not successful and hampered her growth.

[12/30/93 - Milwaukee Sentinel]

Separated Twin Dies at Hospital

Angela Lakeberg, the separated Siamese twin, died on Thursday, June 9th, at The Children's Hospital of Philadelphia, Pennsylvania. The baby lived ten months before succumbing to a heart-lung problem surrounded by her surgical team. No relatives were present at her death.

[6/10/94 - Milwaukee Sentinel]

-- Peg (pegmcleod@mediaone.net), September 07, 2000.


You and your wife are living every parents nightmare.

I am humbled by your experiences.

-- Peg (too@much.spam), September 07, 2000.

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