Shelly: Learning your baby has a birth defect can be overwhelming. The journey ahead may seem unclear, and the fear of the unknown can be incredibly difficult. Know that you are not alone.

My name is Shelly and I’m from Massachusetts, and I was a patient of the Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia or CHOP. Take it from me, the team at CHOP has walked this road with many families before, and they will help you through your journey too. Since 1995, the Center’s Team has cared for more than 27,000 parents like you from all 50 states and over 70 countries. They see rare and complex fetal conditions every day. At your first visit, the team will help ease your fears by providing answers and creating a plan forward. This video will help you feel more comfortable about what to expect when you arrive.

It will be a very full day with a lot of information so it's important to make arrangements for any siblings in advance. The day will be focused on you, your baby, and your support person. Safety is a priority. In response to the COVID-19 pandemic, the team has put every precaution in place to keep you and your family safe.

When you arrive, your fetal therapy coordinator will go over the plan for the day. Because an accurate diagnosis is essential, this day will include a combination of tests to establish or confirm your baby’s diagnosis using the most advanced imaging equipment.

The center’s team has the world’s greatest experience in prenatal diagnosis and care with babies of birth defects. Your fetal ultrasound and fetal echocardiogram happen just a few steps from the waiting room. If you’re getting an ultra-fast fetal MRI, your fetal therapy coordinator will guide you to where you need to be. Your fetal therapy coordinator will be with you throughout the day.

I’ll never forget our fetal therapy coordinator from that first day, and how cared for she made us feel. Every detail of the center’s space has been designed with your medical and emotional well-being in mind. Patient care rooms are private and warm to make you as comfortable as possible.

The team members you may meet during your evaluation include: maternal fetal medicine specialists and a reproductive geneticist, a fetal and pediatric surgeon and a genetic counselor. Depending on your unborn baby’s diagnosis, you may also see other pediatric specialists that day. The center also has a clinical psychologist, a psychiatrist, social workers, a child life specialist, and a chaplain, all there to provide emotional support, counseling and other services throughout your pregnancy. I remember how every staff member was sensitive to what we were going through, and treated us like family. They were willing to walk with us in our struggles, and were compassionate and encouraging at each and every step.

At the end of your evaluation, the team will have reviewed the images to confirm the diagnosis. They will explain your baby’s condition in language you understand. Review options for the pregnancy, answer any questions, and provide you with the educational material about the prenatal diagnosis. A team will make sure you have the information and support you need to make the best decisions for you and your family. They will also partner closely with you and your home doctor to come up with the best plan for your care.

If you learn your baby’s condition requires fetal surgery, you will be in the very best hands. This team has performed more fetal surgeries than any in the world.

Most of the time your baby will be delivered at a hospital near your home with follow-up care provided there, or depending on your baby’s condition, delivery may take place in the Garbose Family Special Delivery Unit for healthy mothers carrying babies with birth defects or genetic conditions.

What makes this labor and delivery unit so special is the individualized care and immediate access to the neonatal and surgical experts your baby may need. A team is made up of experienced labor and delivery nurses, specialty trained operating room nurses, and all attending level physicians. Whatever you need this team will be there. They not only provide the best medical care imaginable, they are also kind and caring people who are deeply committed to every one of their patients, and I speak from experience.