Friday, August 04, 2006
Surgery to separate conjoined twin girls
JENNIFER DOBNER - The Associated Press
SALT LAKE CITY -- They were born in a perpetual hug, their little bodies fused at the midsection so that they are practically face-to-face, and have grown into outgoing 4-year-olds who chatter away and finish each other's sentences.
Conjoined twins Kendra and Maliyah Herrin say they like being together all the time, but they are also full of plans for separate lives. They want to walk without using their wheeled walker, sleep in bunk beds and ride bikes.
"I want to have a princess bike," Kendra said. "I can go fast."
On Monday, surgeons at Primary Children's Medical Center will separate the twins in an operation that could take 14 to 30 hours.
The sandy-haired, blue-eyed girls share one pair of legs, a pelvis, a liver, one functioning kidney and part of the large intestine.
If all goes according to plan, doctors will separate the liver and large intestine, and reconstruct the pelvis. It's possible they will need to make repairs or remove undeveloped or extraneous internal organs commonly found in conjoined twins.
Each girl will get one leg and Kendra will keep the functioning kidney. Maliyah will be put on dialysis until she is strong enough for a kidney transplant from her mother, Erin Herrin,ideally within three to six months.
Dr. Rebecka Meyers, the hospital's chief of pediatric surgery, said she believes this will be the first time separation surgery has been attempted on twins with a shared kidney.
Conjoined twins occur about once in every 50,000 to 100,000 births. Only about 20 percent survive to become viable candidates for separation, and most separation surgeries occur when the twins are 6 to 12 months old.
"The reason for that is partly psychological, partly mechanical," Meyers said. "If Maliyah had had a kidney, these girls would have been separated a long time ago."
But a kidney transplant would have been harder before age 4, and doctors advised waiting, said Erin Herrin, who knew 18 weeks into her pregnancy that the twins would be conjoined.
Previous surgeries were also delayed because Maliyah had difficulty eating and gaining weight.
Before deciding to go ahead this year, doctors and the girls' parents -- who also have 6-year-old daughter and 14-month-old twin boys, who are not conjoined -- talked with ethicists, because the surgery could make things worse for Maliyah. Kidney dialysis and transplant present significant risks, from infection to organ rejection, Meyers said.
"We have more than one ethicist who thinks these girls don't need to be separated," Meyers said. "Mom and Dad have had a chance to hear all of that and talk to people on both sides."
Jake and Erin said they talked at length with the Kendra and Maliyah about separation and had the girls meet with a psychologist before committing to the surgery. They concluded that while the girls expressed some fear about the surgery, separate "was how they saw themselves when they were older," Jake Herrin said.
To prepare the girls for surgery, doctors inserted 17 expanding balloons into the twins' torsos in June. Filled with saline solution, the balloons stretch the skin and muscles, giving doctors more tissue to work with during plastic surgery after the separation. Each week more saline has been added to the balloons.
The process has been more painful than expected and the skin over a least one expander has been slow to heal, delaying surgery by a week. To reduce the pressure on their tender skin, the girls sleep on a 3,000-pound oval hospital bed that is filled with sand to cradle their bodies.
To try to help the youngsters understand what is about to happen to them, Kendra and Maliyah have been given a set of conjoined stuffed dolls to play with. Like the girls, the dolls get Band-Aids and shots. On July 20, Kendra performed separation surgery on the dolls, as Maliyah looked on.
"They gave the babies medicine and said that they were so brave," Erin Herrin wrote in a posting on the North Salt Lake family's Web site. "It is incredible to us how much they really do understand."
Their parents say they are apprehensive about surgery, but eager to get past it and begin the process of recovery, helping the girls adjust to life as two people with separate bodies, not just separate personalities.
Erin Herrin is also sad.
"I guess I'm mourning their separation," Erin Herrin said. "We think they truly have something amazing."
Meyers appears confident about surgery, but expressed concerns about how the family will cope after separation.
"In terms of they way these two girls relate to each other, they have been exactly the same. Once they are separated, they are going to be different," Meyers said. "We've tried to prepare them for that."
On the Net:www.Herrintwins.com
ケンドラちゃんとマリヤちゃんの姉妹は、共有する臓器や器官が多いため、手術は難しく、予後もそう明るくはない。二人が共有しているのは、両足・骨盤・肝臓・大腸・膀胱と尿路、そして手術がこれまで延期されていた最大の難問は二人で一個の腎臓しかない、という点である。子どもには腎臓移植ができず、透析も行えないために、これまで分離手術が行われなかったと主治医が説明していた。上記記事でも、ケンドラちゃんが腎臓をもらい、マリヤちゃんは、移植手術に耐えうるまで、透析で凌ぎ、その後、できれば3ヶ月から半年以内に、母親の腎臓を移植する予定だとある。
日本では、子どもの「得る辛さ」を理由に、二重体児の中絶が行われているのだと思うのだが、二重体児でなくても、重い先天異常のある子どもは生まれてきていて、その都度、内臓の移植手術などをするために、募金をして海外で大変な手術をすることが増えているように思う。二重体児の分離手術と、重篤な内臓疾患の子どもの移植手術と、どちらの生存率が高いのか。誰も教えてはくれないのがもどかしい。
見た目ゆえに、二重体児の中絶が行われているのでなければいいのだが。もし、分離手術によって生きることが出来るならば、二重体児にも生まれてくる権利はあるのではないのか、という思いが、分離手術のニュースを耳にする度に、胸に去来するからである。
