What to Do When You Receive a Fetal Diagnosis

April 5, 2023

Pregnancy and childbirth can be exciting and wonderful, but if your baby is diagnosed with a congenital disease in utero, the experience can quickly evolve into one defined by fear and uncertainty about what is to come. To help you understand what a fetal complication or diagnosis means for your family, and to demystify the path to the best possible care, it is important to find a fetal care team that prioritizes your individual needs.

At Lurie Children’s, The Chicago Institute for Fetal Health performs more than 3,500 consultations each year for all types of fetal disorders. Our experts believe in family-centered care, ensuring patients and their family take a primary role in consultations and decision-making.

Navigating a Difficult Diagnosis

At 20 weeks of gestation pregnant patients typically have an ultrasound that serves several purposes. It is at this point that you may learn the baby’s sex, but this ultrasound also helps physicians detect abnormalities in the growth and development of the baby, among other conditions.

“Typically, anywhere between 17-24 weeks of gestation is when fetal anomalies are generally detected and diagnosed,” Dr. Aimen Shaaban, Medical Director of The Chicago Institute for Fetal Health, said. He went on to note that the diagnosis can either be made through various types of imaging, such as ultrasound, echocardiogram and MRI, or through prenatal genetic testing.

If an abnormality is detected by an obstetrician or maternal-fetal medicine specialist and would benefit from a fetal care consultation, the next step is to find a comprehensive fetal care center, such as The Chicago Institute for Fetal Health. Specialized care centers can provide insight into the severity of a diagnosis and help manage care from pregnancy to birth and beyond.

Whether the patient needs additional diagnostic studies, more counseling or specialized care such as fetal surgery or complex newborn surgery, a comprehensive fetal care team is available to help you navigate what to expect moving forward. Communication and coordination will continue with an obstetrician and maternal-fetal medicine physicians to ensure all the key people are prepared for the delivery and expected care after the baby is born.

Finding a Comprehensive Fetal Care Center

In recent years, several fetal care centers have emerged nationally. However, not all fetal care centers are able to provide the comprehensive, multidisciplinary services of The Chicago Institute for Fetal Health. Fetal care centers are, in a sense, a one-stop-shop – providing all the specialists, testing and resources you need, giving the patient family and the baby the opportunity for the best possible outcome following fetal diagnosis.

When searching for a fetal care center, it is important to assess if the care team is multidisciplinary in nature. Multidisciplinary care teams are made up of experts from a variety of medical specialties who collaborate and provide unique, coordinated insight into diagnoses and care plans. Multidisciplinary care teams are important because they provide individualized, well-rounded, high-quality care to the patient and their baby.

Some key players on the multidisciplinary team at The Chicago Institute for Fetal Health include specialists from:

Fetal Surgery
Maternal-Fetal Medicine
Neonatology
Fetal Radiology
Fetal Cardiology
Fetal Neurology and Neurosurgery
Fetal Urology
Fetal ENT
Pediatric Orthopedics
Genetic Counselors
Fetal Therapy Nurses
Social Workers

Specialists from nearly 25 medical disciplines converge at the Institute to empower expectant patients and their families with the knowledge and support that is needed for the best possible outcome. With each team member focused on a different aspect of the patient’s health, areas of need are more likely to be identified and better managed.

Other factors to consider when choosing a fetal center are experience and expertise, innovation, and research, as well as delivery arrangements and Neonatal Intensive Care Unit, or NICU, access.

Confirm physicians have specialized training in fetal care and high-risk pregnancies, as well as experience treating the baby’s specific diagnosis.
A fetal center that is invested in innovation and research is one that is focused on improving outcomes and advancing this field of medicine. Look for a center that is a member of the North American Fetal Therapy Network (NAFTNet).
Hospital ranking, like those published in U.S. News & World Report, can help determine the level of expertise a hospital has.
The fetal care team should help make patient families feel as safe and comfortable as possible. Look for a fetal care center that will allow the patient to choose whether they would like to deliver the baby in a delivery unit or in a community hospital. It’s important to note that for certain complex diagnoses, patients may be encouraged to deliver at a fetal care center’s facility to have immediate access to pediatric specialists for the baby’s care.
If the baby is going to require a stay in the Neonatal Intensive Care Unit (NICU) after they are born, it is important to find a center with immediate access to a Level IV NICU.

Always be an advocate for yourself and your family. It is important to ask questions and explore all your options so you can feel secure in the level of care you are receiving.

Fetal Care at Lurie Children's

With more than 40 years of experience, The Chicago Institute for Fetal Health is a regional leader in the research and care of pregnant patients with fetal complications. As one of only a few comprehensive fetal centers in the country, the Institute offers prenatal counseling and care, as well as corrective fetal intervention when needed. The goal is to empower patients and their families through an individualized process of diagnosis, counseling and care by a team of specialists, assembled specifically for a patient’s unique situation, regardless of the child’s condition or where the patient will be delivering.

We are here to help and to provide the best care for patient families and their unborn children.

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