What to expect at the Wood Center for Fetal Diagnosis and Treatment

What to expect at the Wood Center for Fetal Diagnosis and Treatment

Referral process

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.

We have a team of full-time prenatal genetic counselors dedicated only to fetal patients, making us one of the most robust teams in a fetal center in the nation. Before your first visit, our prenatal genetic counselors will carefully evaluate your medical record to predict what education, support and genetic testing you may need based on your individual case. Oftentimes, this includes doing hours of research on your individual diagnosis. Other times, it can mean determining what testing you may benefit from and contacting insurance companies to find solutions to any financial barriers to testing. 

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 fetal imaging technology to establish or confirm the suspected condition. You will undergo a combination of the following procedures depending on your baby’s diagnosis:

There are specific protocols designed for each suspected fetal anomaly, and families can observe the projected scans while they are in progress.

Consultation

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.

In this video, Shelly, a mom who traveled from Massachusetts for care at the CFDT discusses the team you will meet and what will happen at your first appointment at the center.

  • Center for Fetal Diagnosis and Treatment: A Tour

    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.
Transcript Transcript

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

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.

Where to start

Know what questions to ask when considering fetal surgery so you can make an informed decision that is right for you and your baby.

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