How long has BCH been kidnapping kids – – – from OTHER countries?

Sindre Hylland was a citizen of Norway, born to Katrin Hylland of Norway and Luxsancumar Sivakanesar, born in Sri Lanka, also a citizen of Norway.

Sindre’s healthcare was covered by the Norwegian Health Ministry. His parents are scientists and have several relatives who are doctors both in the US and abroad. They also have diplomatic connections in the US and abroad. Luxsan keeps meticulous records and coordinated his son’s care.

Sindre was born June 30, 2002 with serious, but not fatal birth defects called Di George Syndrome. His pulmonary valve was absent http://www.pted.org/htms/abspul1.htm and he had a single lung that was about the size of one and a half lungs. Sindre did not have many of the other small birth defects or the significant immunity problems that children with Di George Syndrome often have. His prognosis for a long life was excellent. The serious part of the syndrome was the missing valve. Living with one lung is a not optimal, but not life threatening in any way. All attention was therefore focused on the missing valve.

During those times when he lived at home in Norway, his quality of life was very good and he was happy. With help from special teachers, his development was good and he was only slightly behind in skills. Norwegian cardiologists did not feel qualified to perform the cardiac valve surgery Sindre needed and his father asked permission to take him out of Norway for the operation. Most children from Norway go to Birmingham, England for cardiac repairs. Sindre’s father investigated which hospitals have the best success rate and chose Boston Children’s Hospital.

On March 21, 2003, the family traveled to Boston where Sindre’s defective valve and pulmonary artery were replaced by human donor tissue. The surgery was considered a success with the exception that the parents and the Norwegian medical flight crew felt that he had been released by BCH before he was sufficiently recovered and he had significant medical problems during the flight home to Norway.

Within a year it became apparent that the replacement valve and artery were too large. The replacement artery pushed on the left bronchus and prevented it from growing as the rest of his body grew. (See the before and after graphics of this condition by positioning your computer cursor over the image at: http://www.pted.org/htms/abspul1.htm Images 1&2)

After a significant delay, Sindre’s parents brought him back to BCH in March of 2004 to have the valve replaced. There is a significant ongoing fight about the valve replacement (whether it was done at all, whether it was necessary, whether it was botched the first time, etc). Many children with Di George Syndrome and other cardiac defects have serious problems with gastroesophageal reflux. It is so common that children with cardiac problems are often assumed to have GERD until proven otherwise. Sindre was tested several times in Norway and the US and proven not to have acid reflux. The question was revisited because a number of times doctors would suggest that his growth would improve, or his lungs would function better if he had a fundoplication surgery to fix his GERD. Hence the testing and retesting to assure that he did not have GERD.

The Norwegian Health Ministry was responsible for all medical expenses for Sindre while he was at BCH. It is standard procedure for the International Office staff of BCH to attend medical meetings to get permission from the Norwegian Health Minister for any upcoming expenses. Despite agreement that Sindre did not have GERD and did not need a fundoplication, the International Office sought and obtained pre-approval for the expenses associated with this surgery. The fax giving pre-approval to BCH (in case a fundoplication became necessary) arrived at BCH in August of 2004.

Expensive, Dangerous and Unnecessary Surgery

Just minutes after the pre-approval for this expensive surgery arrived by fax, the surgery was suddenly declared to be necessary and urgent at a team meeting. The parents reminded the doctors that repeated testing showed Sindre did not suffer from GERD. The doctors reversed their previous decision and repeated their new decision that the fundoplication was necessary and urgent.

The parents did not know about the financial pre-approval and were baffled by the sudden focus on a fundoplication. They consulted relatives and professionals in the field and learned about the very significant risks of this major surgery. They decided to ask for an independent outside opinion from a doctor at another hospital. They were denied their request for an outside consult and told that the head of the team (a cardiologist) had already obtained a second opinion for them by stopping a gastroenterologist in the hall and asking his opinion. The parents did not feel this was a legitimate second opinion and repeated their intention to have an outside gastroenterologist examine their son at BCH, or to take him to another facility for a consultation.

At this point the parents were informed by BCH that the doctors intended to take custody of Sindre because the fundoplication was extremely urgent. The parents were told that they would have an opportunity to explain their side to a judge and asked if they wanted an attorney. Due to cultural differences, the parents could not conceive that any judge would side with the doctors given the overwhelming proof and could not conceive of a judge taking custody of a child over such a bizarre misunderstanding. This would never happen in Norway. They also did not fully understand that the meeting with the judge at the hospital was actually a legal hearing and they declined to get an attorney.

Parents want second opinion – lose custody

The parents lost custody at the hearing, and their son was put under guard at the hospital while the parents were not allowed to be alone with him.  The parents turned to an attorney to file an appeal. They called the Norwegian Embassy for help. They wrote an appeal to Senator Kennedy. They contacted a relative with diplomatic ties to the United Nations. They contacted relatives in the US who are doctors. They contacted Fox 5 News and were featured in an ongoing series of updates filmed from the sidewalk outside of Sindre’s room at BCH during the run up to the surgery (similar to a prison watch).

Despite all these efforts, the doctors at BCH performed the fundoplication. Sindre never fully recovered from the operation.

When Sindre was declared ready for discharge by BCH staff, the parents were told that they could either take him home or he would be sent to foster care. The Norwegian Medical Flight crew was very concerned about taking him home but felt there was no other option. The father was told that he would be arrested if he came to the hospital to say good bye to the staff and obeyed as he realized an arrest could prevent his re-entry into the US.                     Sindre died on Christmas Eve, 2004.

Acid reflux isn’t just an adult disease.

Gastroesophageal reflux disease is common in children and is often overlooked, according to the National Digestive Diseases Information Clearinghouse. Signs of the condition in kids include repeated vomiting, coughing and other respiratory problems.

The immature digestive systems of children are usually to blame, and most infants outgrow GERD by their first birthdays. Beth Pulsifer-Anderson “It’s really, really outrageously difficult to deal with these kids,” she said.

Pulsifer-Anderson decided to help other parents cope, founding PAGER, the Pediatric/Adolescent Gastroesophageal Reflux Association.  “My daughter has what was considered to be an extremely rare disease called acid reflux,” Pulsifer-Anderson said. “They told me I’d never get 10 people in a room to talk about it. We get 85,000 hits a month (on the PAGER Web site). That’s how unrare it is.”

Renowned pediatrician William Sears thinks many colicky babies are actually suffering from GERD, calling it one of the most common hidden causes of colic. According to his Web site, www.askdrsears.com, GERD is also a “subtle cause of unexplained bouts of wheezing or asthma in infants and children.”

Clues that your baby suffers from reflux include sour breath, incessant crying, frequent spitting up, poor weight gain, fussiness after eating, nighttime sleeplessness, arching and writhing as if in pain, and appearing to be more comfortable when carried upright.

Ways of helping a child with GERD include breast-feeding; small, frequent meals with lots of burping throughout; and keeping the child upright for 30 minutes after eating.

If the baby is bottle-fed, Sears recommends thickening each 8-ounce bottle with one or two tablespoons of rice cereal, with a doctor’s approval.

Additionally, ask a health-care professional about the safest sleeping position for your child.

Those with severe reflux sleep best on their stomachs, propped up at a 30-degree angle by elevating the head of the crib. Babies without reflux should sleep on their backs.

Correctly diagnosing the disease is an important first step, but it doesn’t make living with a GERD child any easier. Support from others in the same situation is crucial, Pulsifer-Anderson said.

For information, visit the organization’s Web site at http://www.reflux.org.

http://www.chron.com/life/article/Baby-s-colic-actually-may-be-acid-reflux-1573674.php

Please visit and “like” the A Miracle for US facebook page to help support other families. 

SIGN the Parental Rights Petition HERE . . . BEFORE they come for you, and do what you can to share this story, and raise public awareness so these families don’t fight this Goliath alone.