Mother of conjoined Pinoy twins hopes for successful NY surgery

A normal life is all a mother wishes for her one-year-old conjoined twins as they head for New York for surgery to separate them.

Arlene Aguirre, 31-year-old former nurse from Silay City in Negros Occidental, and her twins Clarence and Carl, left late Tuesday night for New York aboard Philippine Airlines flight PR-102.

"Wish ko sana na maging successful ang operation at magkaroon sila ng normal life," Aguirre said in an interview at the Ninoy Aquino International Airport Centennial Terminal 2 a few hours before the 10 p.m. flight.

The Aguirres were accompanied to New York, after a one-night stopover in Los Angeles, by PAL Foundation director Menchu Sarmiento.

Sarmiento is also one of the trustees of Children’s Chance, a non-government organization based in Massachusetts, also in the US, that is sponsoring the babies’ series of operations and therapy.

PAL Foundation financed the twins’ trip to the US for the operation and also helped look for other sponsors.

Clarence and Carl, now one year and four months, were born on April 21 last year at the Philippine General Hospital (PGH) in Manila.

The series of operations and therapy will last for about one year and cost an estimated $2 million, Sarmiento said during a separate interview at NAIA.

Two hospitals will be handling the case: Blythdale Children’s Hospital for the rehabilitation before surgery, and Montefiore Medical Center also in New York for the surgery.

A rehabilitation is also needed after surgery since the twins will be living separate lives by then.

With the operation still unscheduled, Sarmiento said the twins have time to undergo therapy, such as weight gaining to stave off complications. The twins also have to be treated for their respiratory tract infection.

One of the problems of Carl and Clarence is that sometimes milk gets into their lungs because they are always lying down. They are also about 10 pounds underweight at 14 pounds each, she said.

Sarmiento noted that the twins have a conjoined craniophagus, meaning their heads have a common tip.

"That’s less than two percent of all cases of Siamese twins," Sarmiento said, but noted the babies’ brains are separate.

They have shared sagittal sinus, and doctors suspect they have common blood vessels and arteries, she said.

A series of operations will be made within a year’s time, but before this, the babies will have to be nourished. They will be given scalp expanders to bridge the hole that will be created during the operation, she said.

"Any operation is really dangerous. However, the doctors said that the operation is viable. There is a big chance the surgery will be successful. The doctors will not accept the operation procedure if it is not viable," Sarmiento said, sounding optimistic.

"All diagnostic tests were made before the board of directors of the two hospitals accepted the procedure that will be made," she said, adding there were no details yet how many operations exactly will be performed on the twins.

"And therapy will also be made in these hospitals. In spite of their ages, more than one year old, they cannot sit down, walk or even crawl. They also need therapy for this," she said.

Sarmiento recalled that the pediatrician of the babies in Bacolod City, a mutual friend of the mother, approached her last February regarding the babies’ case. They both worked in PAL’s Operation Smile.

In April Sarmiento was also able to get a sponsor for their diagnostic tests from Dr. Raul Fores of Makati Medical Center, and their cardiopulmonary workup handled by Dr. Fe del Mundo.

On the other hand, Sarmiento said that the head neurosurgeon of a team of doctors noted that it would be better to do the surgery while the babies are young since the circulatory system has more chances of recuperating.

If the operation is done later when the patients have aged, regeneration of the veins would be more difficult, she said citing the doctor’s advice.

She said this was the problem that occurred when the Iranian twins had surgery. Since they were already adults at 29, the twins died after surgery in Singapore.

In the US in the past year, there have been two other cases, one of them from Guatemala where the twins died after contracting meningitis after surgery since their family was poor and could not afford further medical treatment.

Sarmiento said the PAL Foundation is currently doing a lot of medical mission cases for a lot of children, even sending them to the States for treatment. She said she is happy with this kind of work.

Aguirre, for her part, felt happy but worried about the risks of surgery.

"I am very happy and at the same time kinakabahan din. Very risky ang operation nila. Natatakot ako para sa mga bata. Pero sana maging successful," the mother said.

Aguirre said Clarence is the jolly, hyperactive one, while Carl is the "suplado" one. They apparently have normal mental health and no speech problem, she said.

Aguirre said both must move in the same direction so that they would not have difficulty.