PedSurg Resource
Fetal Diagnosis and Treatment Committee
Introduction
If you are a patient, parent or family member please click here to go to Parent Resources.
Mission
The mission of the APSA Fetal Diagnosis and Therapy (FD&T) Committee is to establish evidence-based best practice guidelines in the area of fetal medicine and educate the pediatric surgical community in the area of fetal medicine. To achieve this goal, the FD&T Committee will build collaborations with other organizations to conduct high-quality clinical research in the field of fetal medicine. The FD&T Committee will disseminate knowledge to the pediatric surgical community including pediatric surgeons, other healthcare practitioners, patients, and their families. The FD&T Committee will advocate for fetal patients and their families within the pediatric surgical community.
Committee Projects
The Fetal Diagnosis and Treatment Committee is constantly striving to deliver information relevant to the fetal and pediatric surgeon but also to present the information to families in a way that is easy to understand. Here are a few of our projects that are in the works!
- Systematic reviews covering
- Congenital Pulmonary Airway Malformations
- Gastroschisis
- Prenatal Counseling Series
- Intestinal Atresias
- Tracheoesophageal Fistula/Esophageal Atresia
- Myelomeningocele
- Bladder Exstrophy
- Not a Textbook (NaT) fetal module updates
- Congenital Diaphragmatic Hernia
- Congenital Lung Malformations
- Abdominal Wall Defects
- Neck Masses
- Sacrococcygeal Teratoma
- Videos on frequently performed Fetal procedures
Provider Resources
Prenatal Counseling Series
A quick reference to fetal conditions, this series was developed to guide the fetal and pediatric surgeon during counseling of parents and families. The following Prenatal Counseling handbooks are available on the Fetal Handbooks page.
- Bladder Outlet Obstruction
- Congenital Diaphragmatic Hernia
- Fetal Abdominal Cysts
- Fetal Neck Masses
- Gastroschisis
- Myelomeningocele
- Omphalocele
- Persistent Cloaca
- Sacrococcygeal Teratoma
- Twin-Twin Transfusion Syndrome
Pediatric Surgery Not a Textbook
Designed for both practicing and in-training pediatric surgeons, the Pediatric Surgery Not a Textbook (NaT) is updated quarterly so you will know what strategies, techniques and procedures are being used right now. It is written for pediatric surgeons by pediatric surgeons and contains learning objectives, images, videos and links to continuous certification education and the medical literature. The NaT and the ExPERT continuing medical education program are both part of PedSurgLibrary and available by subscription.
Conditions
Congenital Adrenal Hyperplasia
Congenital Diaphragmatic Hernia
Congenital Duodenal Obstruction
Congenital Esophageal Stenosis
Congenital Pulmonary Airway Malformations
Esophageal Atresia and Tracheoesophageal Fistula
Intestinal Rotational Abnormalities
Jejunoileal and Colonic Atresia
Neonatal Intestinal Obstruction
Respiratory Care in the Neonate
Twin Gestations and Twin-to-Twin Transfusion Syndrome
Procedures
Ex Utero Intrapartum Treatment (EXIT)
Laser Ablation of Placental Vessels
Minimally Invasive Fetal Surgery
Articles of Interest
The Fetal Diagnosis and Treatment Committee has identified articles describing the best practices and appropriate standards for clinical management of pediatric surgical disease on Fetal Articles of Interest page. As a group, they are not endorsing the results of these studies as definitive practice.
Events of Interest
Please note - these events are intended for informational purposes only. The Fetal Diagnosis and Treatment Committee does not sponsor or endorse these activities.
Each link within the Events of Interest section will redirect you away from PedSurgLibrary.
North American Fetal Therapy Network (NAFTNet)
Meeting Date / Location: TBA
International Fetal Medicine and Surgery Society
Meeting Date / Location: TBA
Society for Maternal-Fetal Medicine
Meeting Date / Location: January 2022
The Fetal Medicine Foundation / Euro Foetus
Meeting Date / Location: July 14 – 17, 2021 / Lisbon, Portugal
Clinical Calculator
The Fetal Diagnosis and Treatment Committee has identified the following clinical calculators to help guide clinical decision making within the context of the established literature. The Fetal Diagnosis and Treatment Committee of APSA does not endorse any of the individual studies.
Each link within the Calculators section will redirect you away from PedSurgLibrary.
TOTAL Trial Lung to Head Ratio (LHR)[1]
Cystic Adenomatoid Malformation Volume Ratio (CVR)[2]
Tumor volume to fetal weight ratio (TFR) for fetal sacrococcygeal teratoma [3]
Tumor volume: measured by ultrasound or magnetic resonance imaging using the greatest dimensions of length, width and depth to calculate a prolate ellipsoid
Fetal weight: estimated by ultrasound using the Hadlock formula.
A TFR before 24 weeks gestation is predictive of outcome.
A TFR less than or equal to 0.12 has a significantly better outcome than patients with a TFR greater than 0.12
A TFR greater than 0.12 predicted poor outcome with 100% sensitivity and 83% specificity.
Tracheoesophageal displacement index (TEDI) and predictors of airway obstruction for fetuses with neck masses [4]
The sum of the lateral (L) and ventral (V) displacements of the tracheoesophageal complex (T) from the ventral aspect of the cervical spine (CS).
Fetuses with a TEDI greater than 12 mm had an increased rate of complicated airway compared with those with a TEDI of 12 mm or lower.
A TEDI greater than 12 mm predicts a poor outcome with 67% sensitivity and 100% specificity
Parent Resources
Please note - these events are intended for informational purposes only. The Fetal Diagnosis and Treatment Committee does not sponsor or endorse these activities.
Each link within the Parent Resources section will redirect you away from the PedSurgLibrary.
Patient Care Network and Support Groups
The Fetal Health Foundation is a voluntary, non-profit organization whose mission is to provide support and information, fund research, increase awareness and be an outlet for leading medical information pertaining to fetal distresses and syndromes. They strive to arm families and healthcare providers with information and help in saving babies’ lives.
The Twin to Twin Transfusion Syndrome Foundation
Dedicated to providing immediate and lifesaving educational, emotional and financial support to families, medical professionals and other caregivers before, during and after a diagnosis of Twin to Twin Transfusion Syndrome including TAPS, SIUGR, and TRAP.
Current Research Protocols and Clinical Trials
The Fetal Diagnosis and Treatment Committee has identified the following clinical trials that are currently accepting new patients. These selections are compiled by members of the Fetal Diagnosis & Treatment Committee, but as a group, they are not endorsing individual trials.
Each link within the Current Research Protocols and Clinical Trials section will redirect you away from PedSurgLibrary.
Spina bifida, or myelomeningocele (MMC), is a disorder where the lower part of the spinal cord of the fetus is exposed, meaning there is no bone or skin covering it. This is dangerous because the spinal cord contains cells which control one’s ability to move their legs and walk, and also to be able to urinate and have bowel movements normally. One of the current treatments for fetal MMC is to perform a surgery on the fetus before it is born which has many names including in utero surgery, prenatal surgery, or fetal surgery. This is a surgery that occurs inside the uterus (the womb) where the surgeon closes the opening in your fetus’ back to cover the exposed spinal cord.
Researchers have found that adding stem cells to the repair is effective in improving the ability of animals with MMC to walk, and that the stem cells are safe in animal studies. These stem cells are thought to protect the cells in the spinal cord that control movement and developmental outcomes. The Cellular therapy for in utero Repair of Myelomeningocele (CuRe) study is being performed to look at the safety and effectiveness of stem cells on the fetus’s exposed spinal cord during prenatal surgery
Recruitment status: Recruiting
Start date: March 1, 2021
Completion date: March 2024
More Information: ClinicalTrials.gov
The objective of this study is to investigate the hypothesis that delivery at 35 0/7 to 35 6/7 weeks in stable patients with gastroschisis is superior to observation and expectant management with a goal of delivery at 38 0/7 to 38 6/7 weeks. To test this hypothesis, we will complete a randomized, prospective, multi-institutional trial across NAFTNet-affiliated institutions. Patients may be enrolled in the study any time prior to 33 weeks but will be randomized at 33 weeks to delivery at 35 weeks or observation with a goal of 38 weeks. The primary composite outcome will include stillbirth, neonatal death prior to discharge, respiratory morbidity and need for parenteral nutrition at 30 days.
Recruitment status: Recruiting
Start date: August 9, 2017
Completion date: April 2030
More Information:https://www.thegoodstudy.org/ and ClnicalTrials.gov
Early pregnancy renal anhydramnios (EPRA) is a condition where a pregnant woman does not have any amniotic fluid around her fetus because of a problem with the fetus’s kidneys. This condition is thought to be fatal once the fetus is born because of inadequate lung growth. The Renal Anhydramnios Fetal Therapy (RAFT) Trial offers eligible pregnant women with a diagnosis of EPRA an experimental therapy of repeated or serial "amnioinfusions" of fluid into the womb. An amnioinfusion involves placing a small needle through the pregnant woman’s skin into the womb next to the fetus. Warm sterile fluid with balanced electrolytes and antibiotics is then slowly infused into amniotic space inside the womb. The aim is to help the fetus’s lungs grow enough so he or she can survive after birth. These amnioinfusions will be carried out by an expert in fetal interventions at a RAFT center. There is a significant risk of early rupture of membranes and early delivery in subjects who receive amnioinfusions and any potential trial participants will be counseled about these risks before they decide whether to join the trial. Any eligible patients who, after counseling, elect to terminate the pregnancy will not be eligible to participate in the trial. All eligible patients who choose to join the RAFT trial will be able to choose their assignment into one of two arms of the study: (1) to receive serial amnioinfusions (2) to not receive amnioinfusions but receive monitoring for the remainder of the pregnancy at the RAFT center. Thus, assignment of patients to study arm will not be random, but will be decided by the participant. Fetuses who do survive after birth will require intensive medical management for kidney failure including placement of a dialysis catheter and dialysis therapy with the eventual need for a kidney transplant. Treatment for lung disease secondary to abnormal lung development may also be required. The study will follow babies and their families until nonsurvival or transplant.
Recruitment status: Recruiting
Start date: March 18, 2017
Completion date: March 18, 2030
More Information: http://raft-trial.org/ and ClinicalTrials.gov
The International Fetal Cardiac Intervention Registry (IFCIR) regroups all centers that offer in utero procedures for heart anomalies (including treatment for hypoplastic left and right heart syndrome).
More information: http://www.ifcir.org
Sleep-disordered Breathing in Infants with Myelomeningocele
This study aims to determine whether the risk for sleep-disordered breathing in infants with myelomeningocele (a severe form of spina bifida) differs among those who underwent fetal versus postnatal surgery and to examine the link between sleep-disordered breathing and neurodevelopment.
Recruitment Status: Recruiting
Start Date: July 21, 2020
Completion Date: November 30, 2024
More Information: ClinicalTrials.gov
Government Agencies
Each link within the Government Agencies section will redirect you away from PedSurgLibrary.
Genetic and Rare Diseases Information Center (GARD)
The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Eunice Kennedy Shriver National Institute of Child Health and Human Development
References
- Dekoninck P, Gratacos E, Van Mieghem T, et al. Results of fetal endoscopic tracheal occlusion for congenital diaphragmatic hernia and the set up of the randomized controlled TOTAL trial. Early Hum Dev. 2011;87(9):619-24. [PMID:21907109]
- Crombleholme TM, Coleman B, Hedrick H, et al. Cystic adenomatoid malformation volume ratio predicts outcome in prenatally diagnosed cystic adenomatoid malformation of the lung. J Pediatr Surg. 2002;37(3):331-8. [PMID:11877643]
- Rodriguez MA, Cass DL, Lazar DA, et al. Tumor volume to fetal weight ratio as an early prognostic classification for fetal sacrococcygeal teratoma. J Pediatr Surg. 2011;46(6):1182-5. [PMID:21683219]
- Lazar DA, Cassady CI, Olutoye OO, et al. Tracheoesophageal displacement index and predictors of airway obstruction for fetuses with neck masses. J Pediatr Surg. 2012;47(1):46-50. [PMID:22244391]
- Austin MT, Cole TR, McCullough LB, et al. Ethical challenges in invasive maternal-fetal intervention. Semin Pediatr Surg. 2019;28(4):150819. [PMID:31451174]
- Deprest J, Choolani M, Chervenak F, et al. Fetal Diagnosis and Therapy during the COVID-19 Pandemic: Guidance on Behalf of the International Fetal Medicine and Surgery Society. Fetal Diagn Ther. 2020;47(9):689-698. [PMID:32375144]
