What to Expect at the Center for Fetal Diagnosis and Treatment
Whether you travel across town or across the country to reach the Center for Fetal Diagnosis and Treatment, our team is prepared to support you every step of the way, making sure you have the resources you need to make the best decision for your family and find the best possible care for your unborn child.
When a fetal abnormality is found, you or your referring physician should call our Center at 1-800-IN-UTERO (1-800-468-8376) where an experienced clinical coordinator (a nurse or genetic counselor) will gather your initial information.
The clinical coordinator will ask that your prenatal records be faxed to 215-590-2447. Ultrasounds should be sent by overnight mail, and we have a UPS number for your physician's use if needed. As soon as we are able to review your records, we will contact your referring physician with our recommendations.
If you reach out to our Center individually, one of our clinical coordinators will speak with you to gather information and answer any preliminary questions you have. The coordinator will schedule a consultation as soon as possible and arrange to receive all test results and reports from your referring physician.
In some cases, a family coming from afar may need to temporarily relocate to Philadelphia for a period of time to undergo evaluation and care. If you are traveling to Philadelphia from out of town, we can help with arrangements and accommodations. There are many options for you and your family, whether you’re here for an evaluation or need to relocate for a longer period of time.
About your first visit to the CFDT
Your first visit to our Center is planned so everything takes place in a single day. We understand the anxiety you may be feeling and want you to have the information you need as quickly as possible.
When you arrive at Children's Hospital, one of our clinical coordinators will greet you, collect additional medical information and outline the plan for the day, which will include a tour of our facilities.
Evaluation and diagnostic testing
Because accurate diagnosis is essential to planning treatment, we will perform a variety of diagnostic tests using advanced imaging technology to establish or confirm the suspected condition. You will undergo a combination of the following procedures depending on your baby’s diagnosis:
- High-resolution fetal ultrasound
- Fetal echocardiogram to assess the structure and function of your baby’s heart
- Ultrafast fetal MRI
- Low-dose fetal CT scan
- Diagnostic fetoscopy
- Chorionic villus sampling (CVS)
- Fetal blood sampling
- Fetal skin/muscle biopsy
- Microarray analysis
There are specific protocols designed for each suspected fetal anomaly, and families can observe the projected scans while they are in progress.
After your evaluation is complete, you will meet with members of our expert multidisciplinary team to go over your results.
Team members you may meet with include a maternal-fetal medicine specialist or reproductive geneticist, fetal or pediatric surgeon, genetic counselor, social worker, and a nurse coordinator. Depending on your diagnosis, you will also meet other pediatric subspecialists who may be involved in your child’s care, including plastic surgery, urology, nephrology, neurology, neurosurgery, orthopedics or other disciplines.
At this time, we will explain our findings in detail and answer your questions. We will provide educational resources and detailed information about your baby’s condition and outline treatment options, making sure you have all the information you need to make the best decision for your family.
Within 24-48 hours after our meeting, we will contact your physician and provide information regarding the consultation. Throughout the entire process, we will work closely with your physicians back home to coordinate your care.
Treatment and delivery planning
Your baby's condition and other factors will determine whether delivery occurs at your home hospital or in Children's Hospital's Garbose Family Special Delivery Unit (SDU), the world's first birth facility for healthy mothers carrying babies with known birth defects that need surgery before or shortly after birth. Delivering at Children's Hospital means that both you and your baby will receive state-of-the-art care — and you'll never be far apart during your stay.
About 10 percent of the conditions we see require open fetal surgery or minimally invasive fetoscopic procedures. Other patients require only careful monitoring until delivery, with treatment planned for after your baby is born.
Considerations for fetal intervention
Where to Start
If prenatal treatment is available for your individual case and you meet the selection criteria for possible fetal intervention, we will go through a detailed evaluation of the risks and benefits. We will discuss what the remainder of your pregnancy will be like, including potential bed rest restrictions; delivery planning; and the impact fetal surgery will have on future pregnancies. You will receive detailed patient education materials and are encouraged to call our team at any time with questions. Read this list of suggested questions to ask when considering your options for fetal surgery.
After your evaluation, we will contact your referring physician to go over our complete findings and recommendations for fetal intervention.
Relocating to Philadelphia
If you elect to proceed with fetal intervention and travel to Philadelphia, we will provide information about travel and lodging options. All of your appointments are well coordinated. You and your referring physician can anticipate a smooth evaluation process, hospitalization and discharge.
If you have fetal surgery, you will stay in the SDU before and after fetal surgery, and again when it is time to deliver your baby.
If you relocate to Philadelphia to receive your care in the SDU, you may need to bring a support person. Your support person is used in labor and for certain procedures. In the event of relocation to the Ronald McDonald House or a host family, the support person is required to be with you.
If you are being admitted to the SDU, we will ask you if you would like to choose a “lay caregiver.” A lay caregiver is an adult friend or family member who would be willing to help you with your healthcare needs at home. The lay caregiver is different from your support person. In Pennsylvania, it is legally required that hospital staff ask this question. You are not required to choose a lay caregiver, and you can change your mind at any time.
Co-monitoring your pregnancy with your referring physician
If you are not a candidate for fetal intervention, monitoring can often be co-managed with your physician, requiring fewer trips to Children's Hospital. If you return to Philadelphia for delivery, we will co-manage your pregnancy with your referring physician and will assist in the timing of the delivery and coordination of services.
Whatever plan of treatment you follow, our team is here to answer your questions, provide information and support you in any way we can. We are experienced working with insurance companies and other payers to ensure you and your baby have access to the most appropriate treatment.
Supportive, family-centered care
In addition to our social workers who are there to help guide you through the entire process, the CFDT is the only fetal treatment center to have a dedicated clinical psychologist on staff, specifically focused on providing emotional support and counseling for families with diagnosed birth defects.
Counseling and support services available to you throughout your experience include:
- Emotional support, individualized and couple's counseling, and social work services
- Genetic and prenatal counseling
- Evaluation and intervention for preexisting mental health conditions and assessment of risk for postpartum mood and anxiety disorders
- Supportive therapy focused on coping strategies, communication and emotional preparation for each stage of the medical journey, including pregnancy, delivery, the intensive care stay and after discharge
- Palliative care services to support families who learn that their baby is at high risk of dying either before or shortly after birth