After Tom and Kristi Smillie’s 20 week checkup to discover the gender of their unborn baby, they received news that would change their world. Their baby was diagnosed with a diaphragmatic hernia, a rare congenital defect that causes an abnormal opening in the diaphragm and puts the baby’s life at risk.
A diaphragmatic hernia occurs while the baby is developing in the womb. Abdominal organs such as the small intestine, liver and kidney move up into the chest cavity through a hole in the diaphragm. To correct it, emergency surgery must be performed to put organs back in their proper place. It was devastating news for the family.
After researching where to deliver her baby, Kristi decided on Lurie Children’s. She was referred by another patient-family who also had a high-risk pregnancy and was treated by the doctors at Lurie Children’s.
Providing comprehensive care for a high-risk pregnancy with a complex fetal diagnosis, such as the Smillie’s, can be exceptionally challenging. The Chicago Institute for Fetal Health at the Ann & Robert H. Lurie Children’s Hospital of Chicago, the regional leader in fetal and pediatric care, is one of only a few comprehensive fetal care centers in the country able to address this. And with the addition of Aimen Shaaban, MD, a pediatric surgeon and leading expert in the area of fetal surgery, the conditions that The Institute can now treat has expanded significantly.
In July, Dr. Shaaban joined Lurie Children’s to lead The Institute’s expansion, bringing with him more than 20 years’ experience in the area of fetal surgery. While The Institute has always had a charge to empower families to understand their baby’s diagnosis, prepare for the birth, learn what to expect after birth and provide the specialized follow-up care needed for all babies, regardless of where they are born, now even more challenging cases can be treated.
This Institute now has a multidisciplinary, multi-institutional mandate to provide a complete spectrum of care for the fetus and mother ranging from prevention of disease to in utero fetal surgery.
“Through the use of cutting-edge diagnostics and advanced fetal interventions when necessary, The Chicago Institute for Fetal Health can offer care for the full spectrum of fetal conditions,” said Dr. Shaaban, Director of The Institute. “Our focus is on innovation and partnership.”
Partnering across specialties and with referring providers are critical components to delivering the best patient care possible.
A diaphragmatic hernia, which the Smillie’s baby had, is one example of the many conditions that are best treated by a collaborative team of specialists. Another example is twin-twin transfusion syndrome (TTTS), which occurs when twins share a placenta and the blood flow between the two is uneven. Through fetal intervention, laser surgery can be done to separate the cross-circulation between the twins, correcting the problem. The Institute’s clinical team members are passionate about pioneering advancements, such as these, which can lead to improvements in the diagnosis, treatment and care of complex fetal conditions and anomalies.
These multidisciplinary teams, also serve as an extension of an obstetrician’s or maternal-fetal medicine’s practice.
“We recognize that our greatest team members are our referring providers who already have a strong relationship with their patients,” said Dr. Shaaban. “We encourage the referring providers to participate in the team whenever possible. To be able to provide the best possible care, continual collaboration is key.”
Located on the fifth floor of the Ann & Robert H. Lurie Children’s Hospital of Chicago, The Chicago Institute for Fetal Health is available to provide easy universal access to all necessary testing and care. Within The Institute patients can receive ultra-fast MRIs, fetal echo, high-resolution ultrasound, patient education, multidisciplinary counseling, prenatal surgery if needed, and follow-up. Everything is in one place.
With more than 40 years of experience, The Institute’s multidisciplinary team draws on the extensive expertise of faculty from maternal-fetal-medicine, neonatology, fetal surgery and more than 20 other adult and pediatric medical and surgical subspecialties including genetics, social work, advanced practice nursing, among others.
“Each patient has a unique situation which may require attention just after birth or a prenatal intervention before delivery,” said Dr. Shaaban. “Our goal is to make the most accurate diagnosis and develop individualized solutions for the care of each patient.”
While it is always a journey, the Smillie’s little girl Corah is now more than two years old and thriving.
“We see so much joy and strength,” says Kristie, “and we are so grateful to see her live. She beams and grins all of the time. She is unbelievable.”