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This post was in partnership with Ann & Robert H. Lurie Children’s Hospital of Chicago, but all of the opinions within are those of The Everymom editorial board. We only recommend products we genuinely love.

Your Baby Was Diagnosed With a Condition In-Utero—Now What?

Source: Mart Production / Pexels
Source: Mart Production / Pexels

Navigating pregnancy and childbirth is 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 how to find the best care for your unborn child and for yourself. Usually, nothing in life has prepared us for this journey. To help, we’ve called upon the experts at The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital to help you understand what a fetal complication or diagnosis means for your family and to demystify the path to the best possible care.

With more than 40 years of experience, The Chicago Institute for Fetal Health (CIFH) 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. Their goal? To empower you through an individualized process of diagnosis, counseling and care by a team of specialists, assembled specifically for your situation, regardless of your child’s condition or where you will be delivering. If you’re looking for all things surrounding fetal health conditions, look no further… the CIFH has you covered

Meet the Expert

Dr. Aimen Shaaban

Director, The Chicago Institute for Fetal Health

Meet the Expert

Dr. Amir Alhajjat

Attending Physician, Pediatric Surgery, The Chicago Institute for Fetal Health

Meet the Expert

Dr. Kristine Rimbos

Nursing Director, The Chicago Institute for Fetal Health

1. What does a fetal complication or diagnosis mean for me, my child, and the rest of my pregnancy?

When an expectant mother first learns that her unborn baby has been diagnosed with a medical condition, feelings of sadness, worry, and anger are common. Very quickly, these emotions transition to questions of how this disease will affect my baby’s life and if anything can be done to make it better. That’s where the CIFH comes in.

The CIFH specializes in the comprehensive counseling, coordination, and treatment that will be needed. Their philosophy revolves around you as the patient and the sensitivity, support and expertise that is needed from the beginning. Because most birth conditions are not preventable, they encourage you to channel your energy into learning about the baby’s condition and the treatments that are available rather than feeling as if you could have done something differently.

The Institute is a comfortable and private environment, but is equipped with the latest technology needed for the diagnosis and care of essentially any fetal condition.  You will feel surrounded by knowledgeable and caring experts who will partner with you from the first encounter, through the remainder of your pregnancy and beyond.  Every patient’s needs are different, and the goal is to work with you to find the best solution for you. Importantly no patient is ever turned away due to an inability to pay for needed care.

They also noted that not all fetal anomalies require treatment. Per the experts at CIFH, some conditions may resolve on their own before birth. Others may require specialized care during delivery or soon after the baby is born. And for the more extreme circumstances, the experts acknowledged that fetal surgery may be an option to treat the diagnosis.

2. When are abnormalities typically detected during pregnancy?

Within the fifth month of pregnancy (at 20 weeks of gestation), women typically have an ultrasound that serves several purposes. Per the experts at the CIFH, it is at this point that the doctor looks for abnormalities in blood flow, organ, and bone development.

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

Source: Ann & Robert H. Lurie Children’s Hospital of Chicago

3. If there are any sort of abnormalities detected by my OB during a routine appointment, what are my next steps?

After the diagnosis is made by your OB or Maternal-Fetal Medicine Specialist, the next step is to find a comprehensive fetal care center like the CIFH, that can provide better insight into the severity of the diagnosis and manage care from pregnancy to birth and beyond. Whether you need additional diagnostic studies, more counseling or specialized care like fetal surgery or complex newborn surgery, the CIFH is available to help you navigate what to expect moving forward. Communication and coordination will continue with your 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. 

4. What is a comprehensive fetal care center and why is a multidisciplinary team important?

In recent years, a handful of comprehensive fetal care centers like the CIFH have emerged nationally as regional centers to integrate multidisciplinary care of the mother and baby in a one-stop-shop to provide the best possible outcomes for families dealing with a high-risk pregnancy related to a prenatal diagnosis. Multidisciplinary care teams are made up of specialists from a variety of medical departments who collaborate and provide unique insight into diagnoses and care plans, individualized for each patient. At the CIFH, key players on the multidisciplinary team include specialists from: 

  • Fetal Surgery
  • Maternal-Fetal Medicine
  • Neonatology
  • Fetal Radiology 
  • Fetal Cardiology
  • Pediatric Surgeons
  • Fetal Neurosurgery
  • Pediatric ENT
  • Pediatric Urology
  • Pediatric Nephrology
  • Pediatric Neurology
  • Pediatric Genetics
  • Pediatric Endocrinology
  • Pediatric Heart Surgery
  • Pediatric Plastic Surgery
  • Pediatric Orthopedics
  • Genetic counselors
  • Fetal Therapy Nurses
  • Social Workers with Expertise in Prenatal Care
  • And More…

Specialists from nearly 25 medical disciplines converge at the CIFH to empower expectant mothers and their families with the knowledge and teamwork that is needed for the best possible outcome. This method provides high-quality, well-rounded care to patients and their families including fetal surgery if needed. 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.

5. What does an initial appointment with a fetal health team look like? What happens during the consultation?

Before the first appointment

Prior to your arrival, the team at the CIFH will coordinate with your referring physician to obtain and review your medical records. A Fetal Nurse Coordinator will speak with you by phone to better understand your specific needs and provide you with an overview of what to expect at your visit. Next, your case will be reviewed by the Institute’s Director and members of the care team to facilitate continuity of care and ensure that the necessary specialties are present for your consultation. “Our goal is to make the day as easy and as helpful as possible for you and your family,” noted Dr. Amir Alhajjat, who is the Fetal Surgery Co-Director for the Institute. “When you arrive, one of our team members will meet you and escort you to your appointments throughout the day.”

chicago institute for fetal health
Source: Chicago Institute for Fetal Health

Onsite imaging during the visit

The imaging done at the CIFH will go far beyond what was done in your Obstetrician’s or MFM’s office and will greatly assist in the diagnosis and counseling process. Some methods of imaging that you might encounter include: 

  • High-resolution ultrasound: using a wide array of specialized imaging techniques and measurements, the team can better understand the anatomy and function of the baby’s normal or affected organ systems
  • Fetal MRI: using specialized techniques, the doctors will see details of the inner body that are hidden from ultrasound and use this information to help answer questions about the fetal anatomic structure before birth
  • Fetal echocardiogram: a specialized ultrasound examination of the unborn baby’s heart

Consultation with a team of specialists—putting it all together

The experts at the CIFH noted that each consultation is individualized based on the needs of the mother, the baby and hospital where the delivery is planned. During a typical consultation, their multidisciplinary care teams will discuss:

  • The diagnosis and potential cause.
  • The impact on the health of the baby and the mother.
  • The best prenatal, delivery and newborn treatment. 
  • Fetal treatment and surgery if indicated. 
  • Expectations for the remainder of the pregnancy.
  • Preparing for delivery.
  • What to expect when the baby is born.
  • Medical care after birth.
  • The expected long-term outcome and any potential ongoing needs.

After a consult, each family will receive a folder containing information about the baby’s condition, Lurie Children’s and contact information for the physicians and team members who met with your family.

If the experts at CIFH anticipate that your baby will need specialized care in either the neonatal intensive care unit (NICU) or the Regenstein Cardiac Care Unit (CCU), a member of their team will provide a tour for expectant parents and family members. This allows you and your family to see the baby’s room, meet with some of the bedside nurses and become familiar with the care and amenities of these specialized units.  

If you’re looking for more information regarding fetal health conditions from leaders in the field, be sure to check out more information from the experts at The Chicago Institute for Fetal Health here. 

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This post was in partnership with Ann & Robert H. Lurie Children’s Hospital of Chicago, but all of the opinions within are those of The Everymom editorial board. We only recommend products we genuinely love.