In June of 2011 a conversation between Marie and Dr. Kevin Ferguson at a Graduation Party about Mandating Pulse Oximetry Screening in the State in Connecticut prompted some letters to be mailed out to local legislators. A quiet meeting with Senator Michael Mc Lachlan which included Marie, Anne O’ Hara (mother to a CHD angel Eiren and CHD Warrior John) and Mary Ellen Midgely (friend to a CHD angel) in July 2011 was the start of Senate Bill 56. Senator Mc Lachlan requested a Research Report and so began a journey that would lead to saving lives! Our mission was front page news on Christmas Eve 2011 thanks to Robert Miller! Yvonne Nava aired an interview with us all on February 20th and 21st 2012, to raise awareness to our cause and the bill! On March 7th Marie and Matthew travelled to Hartford with some Board Members of Matthew’s Hearts of Hope as well as Erica and Billy Venezia (Faith’s parents) with Hope, Faith’s little sister to show our support for SB 56. In the presence of Senator Michael Mc Lachlan and his assistant Kelley Fournier we shared our stories and the importance of mandating pulse oximetry screening on every newborn. The bill was voted out of The Public Health Committee 2 days later on March 9th. It passed the Senate unanimously on April 18th and on April 26th passed the The House of Representatives also unanimously.
Governor Dannel Malloy signed it into law on May 8th, 2012 and in a private ceremonial signing in July 2012, he renamed SB 56 “Matthew and Faith’s Law” in honor of Matthew and in memory of Matthew’s friend Faith who lost her life to complications from CHD on December 22nd, 2010. Mandated testing began in January 2013. This law has saved lives and a story was written in The New York Times by Michael Grabell, Dad to a baby boy caught using the Pulse Oximetry Screening at Greenwich Hospital. It appeared as an op-ed piece titled “The Simple Test That Saved My Baby” on September 22nd, 2013.
In January 2013, Marie reached out to offer help to Assemblywoman Aileen Gunther in New York and so began a relationship that would lead to mandated pulse oximetry screening in the great state on New York. Many emails were sent back and forth with important statistics and data from studies to prove that pulse oximetry screening in newborns would save lives! On April 30th, Marie, Matthew and Dr. Richard Berning travelled to Albany, New York to meet with Assemblyman Richard Gottfried, Assemblywoman Aileen Gunther and also the staff of Senator Kemp Hannon to discuss the importance of mandating pulse oximetry screening in every newborn. Less than two weeks later it was voted out of committee and Marie and Matthew were guests of honor in The New York Assembly on May 30th when the bill was voted on unanimously! Matthew received a standing ovation and was presented with a Resolution. On June 12th, the bill passed The Senate and Governor Cuomo signed it into law on July 31st, 2013. Mandated Pulse Oximetry Screening began in New York on January 1st, 2014.
In January, 2013 Marie received a phone call from State Representative Bernard Ayotte asking for help with mandating Pulse Oximetry Screening in the State of Maine. He had read our story in Guideposts. Marie sent some emails and linked him in with the bill sponsor State Representative Henry Beck and a local advocate Meg Allen, Rep. Ayotte ended up being a co-sponsor. The bill passed The House and Senate and became a law on July 3, 2013.
In October 2013, Marie reached out to the staff of Senator Benjamin Downing to discuss mandating pulse oximetry screening in MA. The bill had a lot of support already. Senator Downing’s brother had passed away from complications of CHD so it was very personal for him! Marie emailed his staff some statistics and The NY Times Article written by Michael Grabell, Dad to the baby caught using the screening at Greenwich Hospital in July 2013. She also reached out to State Representative Denise Garlick and emailed the same information along to her staff also.
Marie reached out to discuss mandating pulse oximetry screening to State Representative Joseph Mc Namara, he chairs The Health and Wellness Committee in RI. She emailed some statistics, information as well as The NY Times Article.
The Rhode Island Department of Health finalized a regulation that adds CCHD to the mandatory screening panel. All birthing hospitals have already adopted pulse oximetry as part of the standard care. Rhode Island did not need to go the legislative route because the Dept. of Health already had the statutory authority to expand the Newborn Screening Panel.
The State of Vermont added the mandated pulse oximetry screening to their Newborn Screening panel in February 2015 which negates the need to run a bill through legislation. State Representatives Smith and Lippert are supporting Dr. Harry Chen, Commissioner of the State of Vermont Department of Health, in this effort.
All of the newborn screening in Vermont is recommended, not required. The Department of Health is authorized to work with the medical profession to develop and early case finding system and collect information related to identify conditions. That is, they can recommend that certain screenings be done, but can require the reporting of the results of such screenings. Vermont is proud to have the highest rate of newborn screening in the country with this system!