Replies

“why would doctors encourage women to abort their DS babies?”

That is a loaded question.

This article was put out in 1999 but I still hear about it today from parents of Downs kids.

*************************

Parents of people with Down’s syndrome report suboptimal care

People with Down’s syndrome may be receiving suboptimal care because of their condition, suggests a survey published this week by the UK Down’s Syndrome Association.

The survey of 1509 parents who belong to the association found that 28%of respondents expressed a high level of dissatisfaction with the medical care that their child had received.

Liz Marder, consultant community paediatrician, Nottingham Community Health NHS Trust, and medical adviser to the association, said: “Incidents reported in the survey demonstrated that many parents were concerned that the fact that their children had Down’s syndrome affected the treatment decisions made by health professionals.

“The vast majority of patients with Down’s syndrome get good care. But the survey revealed that some get second rate care because of the Down’s,” reported Dr Marder.

Examples suggested that people with Down’s syndrome had been denied treatment for common ailments such as hearing and sight problems. “It appeared that some doctors had suggested that hearing loss did not matter because a child had Down’s, rather than that it was even more important,” she explained.

Some parents with critically ill children reported having been invited to withhold life saving treatment, contrary to standard practice. There were also several cases, including those of patients requiring hip replacement or a renal transplant, in which parents were told that the operation could not be performed because health professionals were concerned that informed consent could not be obtained properly from a person with Down’s syndrome.

The Down’s Syndrome Association has recommended wider implementation of routine checks for all health problems in people with Down’s syndrome and better training for medical students about learning disabilities.

The association is providing a special insert for the parent held personal child health records which will contain information for parents and professionals to help maintain the health of children with the syndrome.

The 14 page insert has been developed by the Down’s Syndrome Medical Interest Group (a group of doctors with a particular interest in the condition) and includes information about ex-pected developmental progress, a suggested schedule of health checks, and a set of Down’s syndrome specific growth charts.

The insert is available from the Down’s Syndrome Medical Information Services (tel: 0115 962 7658, ext 45667).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1115134/