Some babies don’t just have one or two challenges found before birth, but instead have a complex condition with multiple organ systems involved. There are many of these complex conditions, and most are fortunately very rare, meaning that small hospitals may never or only rarely care for infants with these conditions. Many children cannot be fully diagnosed or completely evaluated until after birth.
For infants with these complex clusters of findings, navigating and putting the right team together to help families get the answers and information they need before and after birth is a unique puzzle that requires additional knowledge, training, and expertise in rare pediatric diseases. Our teams at UR Medicine's Maternal-Fetal Care and Golisano Children’s Hospital have the experience and expertise that allows us to work together to find the right team for each of these unique cases.
For most of the infants, a finding at an outside hospital will lead to prenatal evaluation and consultation with our Maternal-Fetal Care team. We will complete a detailed Level II ultrasound, possibly including a fetal echocardiogram (depending on your child’s needs and how far into the pregnancy you are), and review your family and genetic history.
One of our maternal-fetal medicine specialists will discuss all of the findings and review testing and follow-up options. Based on the findings, we will help determine the follow-up and other imaging that may be needed. You may be offered genetic testing as some of these conditions are related to a genetic disorder.
Depending on how far along the pregnancy is, some structures may still be forming, or be too small to see well. In these cases, follow-up assessments and evaluations will be need to fully understand your child’s unique situation. Because a fetus inside is still developing and changing, this can mean that “new” findings as the baby grows and develops are not uncommon at follow-up ultrasounds.
As we watch your child’s growth and development, these changes and findings will help our teams begin to understand your child’s specific care needs and help plan for delivery and care at Golisano Children's Hospital with the team of specialists needed for children these complex conditions.
Preparing for Birth
As your pregnancy progresses, you will need a variety of follow-up and care. Our fetal care coordinators will help coordinate all of this with you.
As the team begins to map and understand your child’s challenges, our Prenatal Diagnosis team will meet to review your case and begin to discuss delivery planning. Our fetal care coordinators will help to make sure you understand the plan, have a chance to meet the specialists, tour the Golisano Children's Hospital, and help guide you through this complex and scary time.