Baby born with extra head

Nurses General Nursing

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http://www.jengajam.com/r/OneAndHalf-Head

Doctors hope to aid baby with extra head

Wed Jan 21,10:10 PM ET

By Jane Sutton

MIAMI (Reuters) - An international team of doctors hopes to operate in the Dominican Republic next month to remove an undeveloped second head from a baby girl born with one of the world's rarest birth defects, caused when a conjoined twin fails to develop in the womb.

Reuters Photo

Canadian Press

Slideshow: Doctors Hope to Aid Two-Headed Baby

The baby, Rebeca Martinez, was born in mid-December at a hospital in Santo Domingo with the head of an undeveloped twin attached to the top of her skull, facing upward.

The infant is otherwise healthy but her brain cannot develop normally unless the undeveloped head is removed, said Dr. Santiago Hazim, medical director at the CURE International Center for Orthopedic Specialties, where the surgery is tentatively set for February 6 or 7.

Her condition, cranio pagus parasiticus, is so rare that there have only been eight documented cases in the world, and no known cases where surgery has been attempted to correct it, Hazim said in a telephone interview.

Conjoined twins form when an embryo begins to split into identical twins and then stops, leaving them fused. Twins conjoined at the head account for about one of every 2.5 million births and about 2 percent of all conjoined births.

Rarer "parasitic" twins occur when one conjoined twin stops developing in the womb, leaving a smaller, incompletely formed twin that is dependent on the other. They can form as an extra limb, torso or head, or as a complete second body, lacking vital organs.

In Rebeca's case, there is a gap in her skull where the heads are joined, and the blood vessels are intertwined, Hazim said. The vestigial head is enlarged and fringed with dark hair like Rebeca's but has a poorly developed brain and only rudimentary facial features, he said.

Rebeca was born weighing about 7 pounds and now weighs over 10 pounds, but the undeveloped head is drawing away nutrients and exerting pressure on Rebeca's brain.

"She was able to go home after a couple of days in the hospital," Hazim said. "She's getting some weight on ... She cries, she wakes up in the morning like a normal child."

Dr. Jorge Lazareff, director of pediatric neurosurgery at UCLA's Mattel Children's Hospital, will lead a team of doctors traveling to Santo Domingo this weekend to examine Rebeca, meet with her parents and decide whether to proceed with the surgery.

"We want to do it, we believe it has to be done ... but the actual decision of going ahead, there is no actual decision," said Lazareff, who led the medical team that successfully separated Guatemalan twin girls joined at the head in 2002.

Two teams, each with nine volunteer doctors, would carry out the operation, working in 12-hour shifts.

Doctors would decide during the surgery whether to try closing Rebeca's skull using bone from the other skull. Otherwise, they would try to close it later using bone from a donor bank or a metal plate, Hazim said.

"It will depend on what we find," he said. "We haven't found one (case) like this in the literature that has been done. I believe this is going to be the first one."

Her parents Maria Gisela Hiciano, 26, and Franklyn Martinez, 28, earn only $200 a month and cannot pay for her medical care.

The doctors are volunteering their services. The hospital where the surgery will take place is operated by CURE International, a nonprofit organization headquartered in Pennsylvania, that provides medical and spiritual care for disabled children in developing nations.

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Specializes in Child/Adolescent Mental Health.

Truly an amazing and heart wrenching story. That sweet little thing dying is just so sad. I hope the parents and everyone else come through it okay.

Losing a child is horrific experience. The parents surely have a tough road ahead.

Thanks to the op for post.

mona

Specializes in PACU.

so sad to hear the news, i thouht they would be able to help her...

Specializes in RN Spanish Translator.

I feel so sad for this family. I was hoping for her to survive this and years from now we can see her on tv riding a bike and going to school. My prayers are for this family and all the health care professionals who tried to help this little baby.

Does anyone know what the baby died from? I'm guess from hemorrhage, but does anyone know for sure?

That would be my guess too. How sad for the parents.

They said it was the first time anyone had ever attempted this type of surgery, because the condition is so exceedingly rare. Hopefully, the docs were able to learn something from the surgery, which may be used to help others.

I was hopeful that she would survive, but I guess it was more complicated than they realized. But they had no choice, they had to try to remove the head. And they did their best.

Specializes in Med-surg; OB/Well baby; pulmonology; RTS.

(((((Rebecca's parents))))))....:o

I'm sure she was welcomed into heaven with open arms....

I just heard about this today! It's so sad and I really feel for the parents!

Specializes in Home Health.

Thank you Kate for posting the update. It is indeed very sad. As soon as I saw the blood vessels were shared between the heads, that is what I figured would make the surgery so difficult.

Poor little angel.

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