Conjoined twins celebrate first birthday; ethical dilemmas still ...

By DEBORAH L. SHELTON
Chicago Tribune

Tuesday, April 12, 2011

Chicago Tribune

Kaydon, left, and Kameron Hayes are all dressed up with their shirts buttoned to each other's as the family celebrated the conjoined twins' first birthday at the University of Illinois Medical Center in Chicago.

Conjoined twins born critically ill last year in the University of Illinois Medical Center at Chicago have reached a major milestone: their first birthday.

Doctors did not expect Kaydon and Kameron Hayes to live this long, and even had discussed terminating the pregnancy with their mother because they were liable to be stillborn. For months after their births, the twins were unable to breathe on their own and periodically had to be resuscitated.

Now Kameron breathes without help, and Kaydon, who is doing most of the breathing for the two, is being weaned off the ventilator. The boys no longer experience crises that require resuscitation. And they are growing.

Still, the boys’ futures remain uncertain, with many of the issues that landed the infants at the center of an ethics argument last year in doubt. Medical experts say the boys, who share a liver and a malformed heart, cannot be separated and are not candidates for a heart transplant. Hospital charges exceed $4 million.

Brianna Manns, 22, the boys’ mother, said she is achieving her goal of charitable her sons a chance to experience life, even if it’s small.

“I can’t say right now that I’m (at peace) with the situation going south,” she said, “but if it does get to that point – if – I’ll be ready, with knowing that I tried. … I gave them that chance, and I experienced fatherliness.”

Though the case is rare, parents and health care professionals grapple daily with heart-wrenching decisions about how far to go with intercession for critically ill infants. Medical advancements can extend many lives, but technology cannot resolve all the issues that follow from such successes.

The twins’ survival highlights some of those dilemmas. On one hand, the babies are alive and forming emotional attachments to their mother and caregivers. On the other hand, that bonding could make their deaths even more painful. And while experts argument the wisdom of spending millions of dollars on their care, who desires to be the one who says no?

Many of the babies’ caregivers agonized during the ahead of schedule months about whether their interventions were going too far, said Lisa Anderson-Shaw, director of the medical center’s clinical ethics consult service. The fact that the boys are alive doesn’t make the aggressive treatment the right pronouncement – or the incorrect one, she said.

“We had the option ahead of schedule on to not do heroic events and to allow the mom to have time with the babies and then allow a natural death,” Anderson-Shaw said. “Now that option is not the same. … It brings up more complicated choices down the road.”

Manns organized a birthday celebration complete with balloons and two cakes on which the boys’ names were spelled out in icing. The boys wore blue crowns with a gold digit one. Later, about a dozen relatives, including their parents, grandparents, aunts and uncles, encircled their bed and sang pleased birthday. The sleeping twins’ eyes popped open while they were being serenaded.

It was a day the family had prayed for.

“It’s a joyous occasion,” said Manns’ mother, Yolanda Butler-Hamer. “We had no doubt that God was going to see us through and that these babies are our miracles.”

In some ways, Kaydon and Kameron are predictable babies. They are gaining weight. They are teething. They poke each other in the face. They hold each other’s hands. They delight in cartoons, Disney movies, bright colors and any object that moves.

Kaydon is laid-back yet sociable. Kameron, an Elmo fan, is the more curious.

Manns spends numerous hours daily with them, washing their hair, playing, helping their nurses with medical procedures, crawling into the hospital bed so she can hold them against her heart. She spends up to two hours daily on public moving getting to and from the hospital.

“Even though they are conjoined, they are two separate babies to me,” Manns said a week before their birthday. “They are very different in each type of way. No, I don’t come here and weep all day. Yes, I have my moments when I question, why me? … That’s normal. … But I have realized that everyone has a special house. Everyone has a special need, and I would treat them no differently, and I like them.”

One of the twins’ worst days was May 17, when their heart and breathing rates plummeted. Manns and the boys’ father rushed to the hospital, everywhere they were told to say their goodbyes. But the twins rebounded.

Their health has improved dramatically in recent months, said Dr. Susan Kecskes, medical director of the hospital’s pediatric intensive care unit, everywhere the babies are hospitalized. They no longer get life-threatening infections, and medicine has been effective in treating their heart failure. They continue to receive oxygen and intravenous feedings.

“How long will their heart be able to sustain their bodies? It’s an unknown,” Kecskes said. “We don’t know, but they have certainly done better than we would have anticipated.”

Even though the babies have grown and bonded with their mother, the underlying medical issues are still there, which leaves the ethical issues in doubt.

With conjoined twins, the single fertilized egg does not fully separate and develops into conjoined fetuses. About 40 percent to 60 percent of conjoined twins are stillborn, and 35 percent survive only one day.

The boys are thoracopagus twins, the most common type of conjoined infants. Such babies are united at the thorax, facing each other, charitable them the appearance when sleeping of being locked in a perpetual embrace. Such twins often share a combined or deformed heart.

The upper chambers of the Manns twins’ single heart, renowned as the right and left atria, have a large hole between them, as do the lower pumping chambers, called the right and left ventricles. As a result, deoxygenated “blue” and oxygenated “red” blood are constantly mixing.

The twins also were born with other abnormalities of the heart and surrounding blood vessels. Most of the boys’ shared liver is in Kameron’s body.

Sets of twins connected at the atria have been fruitfully separated, but no twin connected at the ventricles has survived separation surgery, said Dr. Eric Strauch, pediatric surgeon at University of Maryland Medical Center. Manns’ children share both types of chambers.

Anderson-Shaw questions the wisdom of by scarce health care resources to pay for treatment, which she views as futile. Last week, the cost of the twins’ care, which is being billed to Medicaid, reached $4.3 million.

The twin’s lives have value, and the issue doesn’t boil down to money lonely, she said, but hard questions still must be questioned.

“They are getting wonderful care,” she said, “but to whose function, to what end?”

Manns has declined to sign a do-not-revivify order, saying she desires to give her children each chance.

“The process of having hope is believing positively that everything will be all right,” she said, hovering over their hospital bed. “Yes, there is some reality in it, but if you are going to be hopeful, you have to stay positive.”

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