The need for care and support

This past weekend was the Down Syndrome Affiliates in Action conference. Consistent with past years, the schedule featured sharing sessions and breakouts on best practices for medical outreach and new and expectant parent support. With the advances being made in prenatal testing and research showing that the need for care and support is a key factor for expectant mothers making a decision following a prenatal diagnosis, this information is needed now more than ever.

The value of local support organizations long has been recognized. Studies have found that expectant mothers value the information they receive from local support organizations and that the advocacy by support organizations has improved the perspective of both medical professionals and mothers about children with Down syndrome.

The value of local support groups has been codified in professional guidelines. In 2007, ACOG issued guidelines requiring the offering of prenatal testing for Down syndrome to all expectant mothers. These guidelines further recognized that local parent support organizations can be very helpful for mothers receiving a prenatal diagnosis. The NSGC as recently as 2011 recommended in its guidelines for delivering a Down syndrome diagnosis providing contact information for the local parent organization so that expectant parents can see what a life with a child with Down syndrome can be like.

These peer-reviewed studies and clinical guidelines are further justified by the studies conducted of expectant mothers who have chosen to terminate. Understandably, these studies are few in number. It is difficult to identify study participants, and more difficult still to have these mothers reflect on what is very likely the most significant medical decision they have made at that point in their lives. However, there is a common theme among the few studies in America and another study from the Netherlands: the need mothers express for care from their medical professionals and the need for support were they to give birth to a child with Down syndrome.

The Netherlands study found that overwhelmingly–97%–of the expectant mothers who terminated described their pregnancies as wanted pregnancies. This stands to reason: these mothers were going through prenatal care in order to assure the health of their pregnancy. But, when they received an unexpected diagnosis, they chose to terminate. The top reasons they listed for terminating were:

• 92% believed their child would never be able to function independently
• 90% considered the diagnosis too severe
• 83% considered the burden for the child itself too heavy
• 78% considered the uncertainty about the consequences of the diagnosis too high
• 73% considered the burden too heavy for their other children

Similar concerns have been expressed in studies of mothers who have terminated in the United States following a prenatal diagnosis. Rather than use terms like “burden” or “severe,” instead these mothers expressed their concerns in terms of care and support:

Women interviewed in this project were acutely aware of the lack of services and the diminishing willingness of their communities to provide appropriate care when they themselves are unable to continue their role as caregiver.  All of the participants spoke at length of this situation from their own experiences in care relationships with their children, and also with siblings who required access to disability services.  Three participants also worked outside their homes in disability services.  They decried the lack of available community support and access to care that framed their decision-making process regarding reproduction.  In fact, the lack of access to care was often given priority over strongly held ethical positions, such as those on abortion.

That last line is telling: that the concern over the ability to care for their child took priority over strongly held views against abortion. It demonstrates how compelling it is for mothers that they receive support in order to care for their child, so much so that they may abort if they fear the support will be lacking.

In addition to the need for support from society for their child with Down syndrome, women who terminated also expressed the need for their medical professionals to be more caring. Women who terminated following a prenatal diagnosis said that they wanted the following from their treating medical provider:

(a) honest, unbiased information from medical providers;
(b) lack of judgment;
(c) caregivers who take their cues from the women themselves;
(d) as much time as possible to process the information and to assess its impact on their lives; and
(e) comprehensive, compassionate care

So often discussions about prenatal testing quickly devolve into the binary positions of pro-life/pro-choice. Parent support groups wanting to serve future members and to serve their local medical community should appreciate that the actual lived experience on the individual level is less black-and-white. Instead, focus on meeting the patient where they are. These expectant moms have the very real human need to be cared for and receive support when facing a difficult choice. Let’s give them that care and support.