Considerations for fetal intervention

When you come to the Center for Fetal Diagnosis and Treatment for evaluation of a prenatally diagnosed birth defect, our team will provide a detailed explanation of your baby's condition and treatment options, and review the risks and benefits of fetal surgery for your unique situation. If you meet the criteria for possible fetal intervention, we will provide additional patient education materials to introduce you to fetal surgery.

Fetal surgery is a huge decision for you and your family. To help you make an informed decision, every family receives thorough counseling that includes:

• Educational resources and detailed information about your baby's condition, treatment options, and whether prenatal treatment is available and advisable in your individual case.
• An in-depth benefit and risk assessment.  
• An explanation about the surgical procedure itself, what the surgical team will do, and how you and your baby will be monitored throughout the process.
• A review of the research and clinical studies about the effectiveness of the prenatal treatment, success rates at our Center, and statistical information about outcomes for other moms and babies who've had the same procedure.
• Education about common complications of fetal surgery, including preterm labor, and how we will monitor you for these risks for the remainder of your pregnancy, intervening if necessary.
• Detailed information about what you can expect during your Hospital stay in the Special Delivery Unit for fetal surgery.
• A discussion about what the remainder of your pregnancy will be like, including potential bed rest restrictions.
• Information about your baby’s delivery plan, where you will deliver and what precautions need to be in place to ensure optimal outcomes.
• A discussion about the impact fetal surgery will have on any future pregnancies you have. For example, if you have open fetal surgery, this pregnancy and all future pregnancies will need to be delivered by C-section.

If you elect to proceed with fetal intervention, we will schedule your surgery and help you make all arrangements necessary to travel to Philadelphia for treatment. You will receive information about your evaluation schedule, travel and lodging, and all appointments for tests and consultations will be well coordinated. You and your referring physician can anticipate a smooth evaluation process, hospitalization and discharge. We will communicate our complete findings and recommendations for fetal intervention with your referring physician to provide the most coordinated care.

We are happy to answer any questions you have along the way, in person or through follow-up phone calls.

If you are not a candidate for fetal surgery, we will coordinate with your referring physician and will follow the progression of your pregnancy. For certain conditions, you may have the option of delivering at Children’s Hospital so that your baby can receive specialized care or surgery immediately after birth.

For families who return to Philadelphia for delivery of their baby, we will co-manage your pregnancy with your referring physician and will assist in the timing of the delivery and coordination of services.

Your fetal surgery care team

You will be cared for by a multidisciplinary team of experts including fetal surgeons, neurosurgeons, maternal-fetal medicine specialists, fetal cardiologists, neonatologists, anesthesiologists, sonographers, advanced practice nurses, a psychologist, social workers and coordinators — all focused on the best outcome for you and your baby. Your child will also have immediate access to the full resources of The Children’s Hospital of Philadelphia for whatever additional care he may require.

Planning for your hospital stay

You will need to remain close to the Hospital before and after surgery, up to delivery. If you choose fetal surgery at the Center for Fetal Diagnosis and Treatment at CHOP, it's likely you will be a patient in the Garbose Family Special Delivery Unit (SDU) twice — first for your fetal surgery, and then again for delivery of your child. The SDU is the world’s first delivery unit within a pediatric hospital created specifically for healthy mothers carrying babies with known birth defects.

It is extremely important to have at least one person stay with you for the entire time you are in the Philadelphia area. After fetal surgery, you will be unable to fully care for yourself and will need others to help you. It’s important to establish who your support person is in advance of surgery so you can make the necessary preparations. In the event of relocation to the Ronald McDonald House or a host family, the support person is required to be with you. Our Center’s social workers will assist you with finding the best housing arrangements for your situation, including local Ronald McDonald Houses and Hosts for Hospitals.

If you are admitted to the SDU for fetal surgery or delivery, we will also 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.

Our Center staff is experienced working with families to identify area resources that can help with relocation issues such as housing, financial matters and emotional support. We work with many insurance plans to facilitate care for families who seek our services, and have resources available to assist families with travel-related and other expenses associated with coming to CHOP. We are happy to discuss your individual situation and needs.

Before fetal surgery

The day before fetal surgery at the Center, a perinatal nurse practitioner or certified nurse midwife will again obtain a patient history and perform a physical exam. Tests done on this day include: urinalysis, electrocardiogram (EKG), chest X-ray, vaginal ultrasound and blood test. You’ll also meet with a social worker.

At the end of the day, you will meet the entire team who will be taking care of you and your family during and after surgery. This meeting includes team members you met during your evaluation and consultation, as well as others, including operating room nurses, obstetric nurses and anesthesiologists.

Patient and family education is a large part of this meeting. We’ll discuss details of surgery, what to expect during and after the procedure, pregnancy outcomes, C-section delivery, potential effects of the surgery, and more. There will be plenty of time to answer any questions you have.

The day of fetal surgery

The morning of fetal surgery, you will arrive at the Special Delivery Unit for admission. An obstetric nurse will greet you, take you to your room and prepare you for the operation. You will be given medication to decrease uterine contractions and reduce acid reflux. You’ll meet operating room nurses who can answer any additional questions you have about the procedure.

The anesthesiologist and the obstetric nurse will go with you to the operating room. During surgery, you and your unborn baby will be continually monitored.

Recovery after fetal surgery

After undergoing fetal surgery, you will remain in the Hospital under intensive monitoring for three to four days, depending on your condition. During this time, your perinatologist will perform daily ultrasounds to monitor your unborn baby’s condition. A fetal cardiologist will also perform daily echocardiography to evaluate your baby’s heart the first few days after surgery.

Preterm labor is the most common complication of fetal surgery. While you are in the Hospital, you will be closely monitored for any signs or symptoms of preterm labor.

You will remain on bed rest during your hospital stay, except to use the bathroom and shower. Our staff will monitor you for any signs of infection and other possible complications from fetal surgery.

After you are discharged from the Hospital, a perinatal nurse practitioner or certified nurse midwife will coordinate your ongoing prenatal care.

For the remainder of your pregnancy, follow-up includes:

• Weekly visits to the Center for ultrasound monitoring
• Assessment of postoperative discomfort, wound healing and prematurity risks
• Biophysical profile to determine the well-being of your unborn baby
• Standard prenatal care

Planning for delivery after fetal surgery

As your due date nears, you will meet with more members of the Special Delivery Unit team, including a lactation specialist who can help you learn about pumping, providing milk to your child and transitioning to breastfeeding.

If you had open fetal surgery, this pregnancy and all future pregnancies will need to be delivered by planned C-section due to the uterine wound made during prenatal surgery. The C-section prevents wound separation or rupture. If you had a minimally invasive fetal therapy, you may still be able to deliver vaginally. Your clinical team will discuss with you the best delivery option for you and your baby.

Delivery will take place in the Special Delivery Unit, which offers the highest level of immediate care for your newborn, as well as expert obstetric services for you, and allows you and your baby to remain together in the same hospital for the duration of your care. After your baby is born, there are several options for parents to stay overnight in Children's Hospital. Learn more about your experience delivering in the SDU.