• Type I SCT is an external tumor (outside the body) and is easily identified during a prenatal ultrasound or at birth.

• Type II SCT is mainly an external tumor, but a portion is inside the body of the newborn.

• Type III SCT is mostly an internal tumor, but a portion is outside the body.

• Type IV ICT is completely inside the baby’s body and does not project externally. It is usually recognized slowly and has a high rate of malignancy.

The majority of cases of SCT are diagnosed prenatally. This usually happens at the beginning of the second trimester of pregnancy during the prenatal ultrasound where it appears as a mass in the buttocks of the fetus.

When such a problem is found, the pregnant woman should be referred to the PKOOP. A further check-up will be done to assess the severity of the condition and we will advise you on the rest of the pregnancy to help you understand what to expect after your baby is born (prenatal counseling).

These tumors sometimes grow rapidly, reach very large sizes, and polyhydramnios and heart failure can occur.

Prenatal ultrasound examination often raises the suspicion of a tumor of the sacrococcygeal area.

In this case it is necessary to perform a detailed diagnostic test which includes:

• An ultrasound of the baby, where we examine in detail the size and characteristics of the tumor

• An MRI of the baby, to have more details about the tumor, the spine and surrounding structures

• A fetal echocardiogram to assess your baby’s heart function

After completing your exams, our center’s expert team will discuss the results and then meet with you in a group meeting.

Important features of the group meeting include:

• Presentation of the care team that will be involved both before and after the birth of your baby

• Presentation of your baby’s problem

• Description of prenatal treatment options, if needed

• Develop a plan for the care of the rest of your pregnancy and delivery

• Description of treatment and

• Description of the long-term outcome of your baby after birth

After the initial evaluation, if you choose to remain in our care, we will continue to monitor your baby’s health closely with frequent ultrasounds and fetal echocardiograms.

Even babies with small tumors can develop heart problems. As the pregnancy progresses, the risks of preterm birth and preeclampsia increase.

You will need to give birth in a hospital with a neonatal intensive care unit of maximum level (level III), which can support the specialized medical and surgical care your baby will need after birth.

If you deliver in another hospital you should be transported immediately to our hospital.

Timelydelivery is very important in children with SCT.

In addition, due to the typically large size and fragile nature of the tumor, in most cases we recommend caesarean section.

Most cases of SCT are treated after birth. Your baby will need surgery to remove the tumor within one to three days after birth, depending on the case.

Surgical removal of part of the tumor with fetal surgery (utero debulking), which is performed in very few centers around the world is not applied in our hospital. The goal of utero debulking is to remove most of the tumor to reduce the chance of heart failure during pregnancy.

• After delivery, your baby will be transferred to the Neonatal Intensive Care Unit and stabilized. Once stabile, within the first to third day of life, your baby will have surgery to remove the tumor.

• While most SCTs are benign, some become malignant. With larger tumors, there is a slightly higher chance of malignancy or recurrence. These tumors tend to respond very well to chemotherapy.

• The survival rate of children with SCT who undergo timely surgery after birth is about 90%.

• Your child will need follow-up for at least the first three years of life for the possibility of recurrence.

Most children born with smallSCT are good for overall long-term health but may need extra care.

The problems that a child with SCT may have depend on the size of the tumor but also on the structures it infiltrates (nerves, muscles).

These problems can include damage to nerves and muscles of the pelvic structures, resulting in dysfunction of the sphincteric mechanism and consequently problems with constipation or fecal incontinence, but also bladder dysfunction with urinary disorders.Some of these patients will need support from the PKOOP for long periods of time BOWEL MANAGEMENT PROGRAM