Published on in CHOP News
Birth defects can be unpredictable, rapidly shifting from stable to life-threatening during the course of pregnancy. For families facing these conditions, it is critical to seek care from an experienced fetal diagnosis and treatment center as early as possible so an expectant woman can receive prenatal counseling about their unborn baby, discuss in certain circumstances whether fetal surgery is an option, and/or undergo close prenatal monitoring until delivery.
In cases where fetal treatment is an option, timing is especially important. There is often only a small window of time to change the course of a child’s life by lessening the severity of an anomaly, correcting it, or changing the timing, mode and place of delivery for optimal outcomes.
Because of the rarity of birth defects (4% of all births; approximately 120,000 babies a year), rapid access to an experienced fetal center has not always been available, including for military families. Delays in obtaining referrals could be too late in the pregnancy for effective in utero treatment. This puts the pregnancy at greater risk for potentially devastating outcomes for the baby and/or mother.
Combatting barriers to care
As an internationally recognized leader in fetal diagnosis, fetal surgery and fetal care, and one of the most active fetal centers in the nation, CHOP’s Center for Fetal Diagnosis and Treatment has seen first-hand the risk this barrier to care poses for any family as well as to military families. Committed to doing everything in their power to serve all families, including military families, and provide the best start for their unborn children, CHOP leaders set out to change this policy.
Over the course of more than four years, CHOP leaders and government affairs staff visited congressional offices, made calls, sent emails, and collaborated with colleagues at Anne & Robert H. Lurie Children’s Hospital of Chicago and Children’s Mercy Hospital in Kansas City, Missouri, to gather support. Thanks to their efforts and the leadership of former New Jersey Congressman Tom MacArthur, as well as Senators Mike Rounds, Robert Casey and Cory Booker, the language to expedite treatment for fetal interventions was included in the FY 2018 National Defense Authorization Act (NDAA), signed into law in December 2017.
Advocating in Washington
The team then turned their efforts toward implementation of the law, beginning with a trip to Washington in January 2018, during which N. Scott Adzick, MD, CHOP’s Surgeon-in-Chief and a fetal surgery pioneer, spoke with members of Congress and legislative staff to encourage them to urge the Department of Defense to quickly enact the required policy changes. Dr. Adzick — joined by Maternal-Fetal-Medicine expert Philip Bayliss, MD, and a CHOP family whose child received in utero surgery — also spoke at a congressional staff briefing to provide background and education regarding the law and Children’s Hospital’s advocacy efforts.
After more months of advocacy, the Department of Defense Tricare policy manual was updated to require expedited referrals for military families seeking care from fetal diagnosis and treatment centers throughout the country.
“This was a total team effort,” says Lori J. Howell, DNP, MS, RN, Executive Director of the Center for Fetal Diagnosis and Treatment. “This update now allows our team and fetal teams across the country to provide the access and quality of care our nation’s military families need and deserve.”
Removing barriers to care
In the past, referral to a specialized fetal care center required authorization from a service member’s base commander. That was the case for Zheni and Johnathan, who were 18 weeks pregnant when they learned their baby had a sacrococcygeal teratoma (SCT), a potentially life-threatening tumor that can grow quickly, in certain instances fetal surgery may be an option and the fetus requires ultrasound and fetal echo monitoring throughout the pregnancy.
The couple struggled to get a referral to CHOP and were seen at a local hospital. When Zheni was able to get a referral to CHOP’s Center for Fetal Diagnosis and Treatment, the tumor had doubled in size and was causing strain on the baby’s heart.
On the Side of Kids
Zheni required an emergency C-section in CHOP’s Garbose Family Special Delivery Unit, the world’s first birth facility in a free-standing children’s hospital exclusively for healthy mothers carrying babies with known birth defects. A day after the delivery, their daughter Ava had the gigantic SCT tumor surgically removed. Were it not for the center’s expert management, delivery and surgical skill, Ava would not have survived. Read their story.
Alternatively, when Amanda and Dave’s son, Andrew, was diagnosed with myelomeningocele (MMC) — the most severe form of spina bifida — at 19 weeks gestation, their ability to quickly secure a referral to the Center for Fetal Diagnosis and Treatment, the national leader in prenatal repair of MMC, gave Amanda the opportunity to have fetal surgery, which gave Andrew the chance for the best outcome after birth.
“We believe his future is bright, and the care we received at CHOP is the reason,” says Dave.
“With this new policy, now when a family needs care they can be seen in a matter of days, as opposed to weeks or months,” adds Howell.
CHOP continues to advocate for many state and national legislation and public policy initiatives as it strives to improve and preserve the health of children.