Capitol Connection: Newborn Health Screenings

March 5, 2014

One of the great things about lawmaking in Connecticut is the opportunity for everyone to share their thoughts and ideas throughout the process. The General Assembly’s public hearings in particular provide opportunities to learn about and express opinions on important issues the legislature plans to address.

Important issues include everything from the ingredients in road salt to better monitoring newborn health screenings – and today I want to highlight why this issue, discussed in a public hearing last week, resonates strongly with me.

In Connecticut, hospitals are required by law to screen newborns for a variety of medical disorders and abnormalities with a blood test shortly after birth. This test diagnoses issues that have to be treated immediately, saving lives and preventing significant health issues every day. Unfortunately, the system to process the test is seriously flawed.

There have been multiple reports of labs failing to receive samples for testing, hospitals and doctors not getting test results, and sometimes tests are completed so late that some infants have already suffered permanent damage from disorders going untreated. Because of miscommunication and problems tracking the results, newborns who should be diagnosed and treated are suffering from preventable damage.

For example, the Journal Sentinel recently reported on a child in Darien who suffered from a dysfunctional thyroid, an ailment that can be diagnosed through this test and can be easily treated with hormones. But, the child’s family did not know about his condition until 99 days after his birth because of delays in his blood test results. His treatments were overdue and in those 99 days he developed permanent neurological damage, which will affect him for the rest of his life.

When something so tragic happens, it is clear that the system is broken in many places. Some hospitals may be slow in collecting samples, some labs may be slow in processing results, and the health department may have an insufficient way to monitor these tests and communication of results.

To help fix the system, the General Assembly is considering a bill I co-sponsored this year. Raised Bill No. 223: An Act Concerning the Timeframe to Complete Newborn Health Screenings, would require the Department of Public Health lab to report newborn screening results within 24 hours after receiving a specimen. By adding this requirement, all involved parties would have a standard and deadline they have to meet – an important first step in fixing the system.

I share the story of newborn health screenings with you to highlight the significance of issues the legislature hopes to address this year. Last week’s hearing on the bill gave the public an opportunity to both learn and teach others about the situation, emphasizing the importance of public participation especially when it comes to serious issues that impact all families.

As we continue to open important discussions with public hearings, I encourage you to participate whenever you can, by both listening and testifying.

Legislators can start the conversation, but your participation makes the conversations grow, develop and produce actions.