Norway: Immigrant children born with serious deformities

"We see deformities by immigrant kids more often," says Rolf Lindemann, department head at Ullevål university hospital.  The kids parents are usually related.  Now the Norwegian Institute of Public Health (Folkehelseinstituttet) is working on a report about intermarriage to survey where is the big problem with deformities.

Rolf Lindemann, who is medical department head at the newborn intensive unit of Ullevål doesn't doubt that deformities come up more often by children of immigrants then by ethnic Norwegian.  "We often see that this occurs - and more frequently than by ethnic Norwegians." he says.

The children are born with a wide variety of different deformities, according to Lindemann:

"Everything is possible, from heart failure, urinary tract and skeleton, to brain disease.  Many of the children die of the deformities they are born with," says Lindemann.

The Institute of Public Health won't comment currently where the big problem is, but is in full swing mapping out the extent of the medical consequences of intermarriage in Norway.  This is being done on commission from the Ministries of Health and Care Services, Labour and Social Inclusion and Children and Equality.

Many of the illnesses are known syndromes, which come up due to gene mutations.  The mutations lead to deformities in the child because the parents are related and with that have the same mutations.  The Pakistanis and Kurds are among the groups with traditionally marry with relatives according to researcher Torunn Arntsen Sørheim of the Norwegian Center for Minority Health Research.

"We routinely find that there are relations between the parents when we see that a child has a deformity.  In children of immigrants we quite often know that the child's parents are related."  explains Lindemann.

Often the deformities are discovered already when the mother comes for a pregnancy checkup.  "Many illnesses can be so serious that we advise not to go further with the pregnancy.  Many of the immigrants, however, don't want to abort, on the grounds of belief and religion." says Lindemann.

The parents are informed that their child's illness is genetically caused.  Lindemann thinks that many of them know the risk that parents which are relatives run to have a sick child.  "They say that their fate lies in Allah's hands and that this is the opinion." says Lindemann.  He stresses that these attitudes can also be seen among extremist religious ethnic Norwegians.

"Is the total number of immigrant children with deformities growing?"

"I can't say that for certain.  I believe that it adjusts itself.  Most handicapped don't bear children and therefore the mutations don't go further." says Lindemann.

Also at Rikshospitalet medical center there are immigrant children born with deformities that come of intermarriage.

"We see a good deal of unusual deformities by immigrant children" says Thor Willy Ruud Hansen,  medical director and professor at Rikshopitalet-Radiumhospitalet Medical Center.

"Then we scratch our heads and put in big resources to find out what this is." he explains.  The hospital uses international contacts, expertise from their own hospital as well as others.

"Are these deformities more severe then what you usually see?"

"There are more that still don't fit into a pattern and we suppose that they come from intermarriage.  It's known that there is bigger risk for deformities when people who are related have children,"  Ruud Hansen points out.

The reason is that there is a much bigger risk that both parent have the same gene failure and this has consequences for the kid when the parents are related.  "We see whole variations of deformities, from small things to life threatening deformities," says Ruus Hansen.

"Do the parents know that here is a risk for deformities with intermarriage?"

"I haven't had enough contact with them to say for certain," says the doctor, who can neither show numbers which tell whether the proportion of deformities by immigrant children has increased.

Genetics professor Karen Helene Ørstavik, from Rikshospitalet, points that the numbers are quite clear: "The risk for serious inborn deformities by children of parents who are cousins is double as that for parents who aren't near relatives." says Ørstavik.  The occurrence of inborn deformities is 2% for parents who aren't related, and 4% for parents who are cousins.

Geneticists are often asked to help in making the diagnose in case a child is born with deformities.

"We meet the family, and take the family history.  Information on intermarriage can be of importance for the doctor who makes the diagnosis." says Ørstavik.

Intermarriage increases the risk for many different types of serious deformities.  "This often concerns diseases where there is something wrong with the development of the central nervous sytsem, often with mental disabilities as a result.  These diseasaes are often herditary from one gene, that is to say that there is a change in one gene-pair which determines if the child becomes sick or not" says Ørstavik.

Sometimes a couple can be double cousins.  "For example, their mothers can be sisters and their fathers brothers.  That increases the risk" says Ørstavik.  The risk increases also somewhat in a family where many members intermarry.

Karita Bekkemellem, Minister of Children and Equality, doesn't want to comment on the issue.  Her ministry refers to the Health and Care Services Ministry.

Rigmor Aasrud of the Health and Care Services Ministry says that they are attentive to the problem of intermarriage and know that having a child from close relatives can result in unfortunate health consequences for the children.  "The ministry is responsible to have information on what health consequences having a child from close relatives can result for the children.  the ministry is also responsible to inform people of these consequences."

The ministry asked the Directorate of Health and Social Affairs to evaluate the need for informative measures on the health consequences of marriage between children of siblings, says Rigmor Aasved.

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Reseracher Torunn Arntsen Sørheim says that the tendency to intermarry is higher among the Pakistanis in Norway then in Pakistan.

Torunn Arntsen Sørheim, of the Norwegian Center for Minority Health Research (NAKMI) researched the Pakistani community for many years.  He has also traveled to Pakistan many times.

The Pakistanis and a big part of the world's population have a tradition to marry with family members.  "Around a fifth of the world's children are born of parents who are related.  In Pakistan this is a tradition, even if it appears that there is a tendency for disease," says Arntsen Sørheim

Kurds are another group which has a tradition to marry between relatives.

She explain that the tendency for marriage among relatives is somewhat higher among Pakistanis in Norway.

"It has to do with migration and security.  Life is hard in Pakistan and those who traveled to Norway, wish to help their relations.  Additionally, it strengthens the connection between relatives." she says.

Arntsen Sørheim thinks hereditary and inborn conditions among children are also a health challenge among families in Pakistan but that it is more visible in the Norwegian community.

"In Pakistan there is such a high infant mortality rate that the hereditary and inborn diseases aren't so visible."  The children die to a large degree of infections, malnutrition or of a mixture of health problems, he points out.

Arntsen Sørheim explains that many Pakistani parents think it is a punishment to get children with disabilities.

"It is very important with good communication between health personal and the family.  And the families aren't just the parents, but maybe a grandmother who traditionally administers knowledge on children and health.  They must get access to knowledge about what causes diseases, such that the insight will lower the opinion that this is a punishment for previous sins.  It is especially important when talking about hereditary diseases.  It hurts to get to know that people have children with hereditary diseases."

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Department manager Camilla Stoltenberg of the Institute for Public Health is responsible for the new report on marriage of children of siblings among immigrants which will be delivered at the end of March.

"the background for the ministry asking for a report is the debate on the occurrences of intermarriage, the medical consequences, should something be done with this and eventually what can be done," says Stoltenberg.

In his doctoral research from 1997 Stoltenberg showed that there were about 40% marriages between children of siblings among the immigrants from Pakistan and children born in Norway, and about 50% total marriages among near relatives.

"There is a certain uncertainty associated with these numbers, but it isn't likely that there is over-reporting.  In the new report we will answer whether there are just as many such marriages today." says Stoltenberg.

Source: Dagens Medisin (Norwegian)