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Boston Children's has launched the world's 1st program dedicated to offering hand transplants to children who qualify.
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There are many ways you can help children and their families get the care they need.
Boston Children's Hospital and the Advanced Fetal Care Center are committed to cutting-edge clinical research and innovative medicine and surgery. We want to make a difference in your prenatal care, the care of your baby-to-be and the care of generations to come. The goal is to continue to find ways to detect and treat fetal disorders through medical and surgical innovation.
Click the following links for descriptions of some of the research currently underway at Boston Children's Hospital and the Advanced Fetal Care Center.
These studies are completed and no longer seeking participants. Click to read a summary of the goals and findings.
Innovative surgical and medical treatments are at the heart of Children's and the AFCC.
Principal Investigators Dr. Jay Wilson and Dr. Barbara Pober are interested in trying to uncover the genetic causes of congenital diaphragmatic hernia (CDH). Through this study they hope to improve the outcomes for the next generations of persons born with CDH.
In order to participate, you will need to:
There is no cost to you (or your insurance company) to participate
There is no direct/immediate benefit to you from participating in this study; however, we hope that our findings may benefit others with CDH in the future.
For more information about our CDH Study, please contact one of the following staff members:
The archive of the Congenital Diaphragmatic Hernia Study Newsletter (or CDH News) is a tremendous resource for families interested in the study's progress and discoveries. Click here to download issues dating back to 2006.
Principal Investigator Dr. Mark Puder is interested in identifying the positive and negative effects of an intravenous fat solution, Omegaven, on Children's who receive their nutrition intravenously (a method called parenteral nutrition). The solution is currently not approved by the Food and Drug Administration (FDA). Information from this research will help determine whether the drug should be approved by the FDA in the future.
Many children who are recovering from complex intestinal surgery or are awaiting intestinal transplant can't eat food. That's because the intestine they do have can't adequately perform its part in the digestion of solid foods. These children are placed on an intravenous method of feeding called parenteral nutrition (PN).
PN provides the necessary nutrition for children until their digestive systems adapt and they can eat on their own.
PN has revolutionized treatment for diseases such as short bowel syndrome. But its prolonged use often damages the liver, potentially leading to liver failure and the need for a transplant. And unfortunately, infants are at the greatest risk.
Back in 2001, surgeon Mark Puder, MD, surgical resident Jenna Garza, MD, and pharmacist Kathy Gura, PharmD, decided to conduct studies in mice to see why PN was causing liver disease.
They found evidence that the fat used in congruence with standard PN solutions, called Intralipid, was contributing to liver disease by causing fat to accumulate in the liver.
They then tested Omegaven, an IV fat mixture made from fish oil. Fish oil contains omega-3 fatty acids, which have been shown to prevent fat accumulation and have anti-inflammatory properties.
As they hoped, PN using Omegaven as the fat prevented and treated liver injury in the mice.
Surgeon Rusty Jennings, MD, director of Children's Esophageal Atresia Treatment Program and consultant to the Advanced Fetal Care Center, had heard of Puder's research and wanted to try Omegaven in one of his patients. Since Omegaven wasn't approved for use in the U.S., Puder had to receive special permission from the FDA to use Omegaven rather than Intralipid along with the PN solution.
Within two months, the baby's liver function improved so much that he was removed from the liver transplant list.
Puder later treated a second child, a premature baby whose bowel had ruptured; he too had complete resolution of liver disease.
Puder and colleagues are now conducting a formal clinical trial, and have received funding from the March of Dimes and the FDA Ophan Products Division aimed at preventing liver disease in PN recipients. Their work has caused a worldwide shift in treatment.
More than 150 children at Boston Children's Hospital have received Omegaven, and more than 90 percent of them are still alive.
For more information about the Omegaven study, please email one of the research coordinators:
In this study, conducted in collaboration with the Fetal-Neonatal Neuroimaging & Developmental Science Center, we aim to study the evolution of brain injury in babies and its effect on normal brain development while the baby is still in the mother's womb. We will study how a fetal disease, Twin-Twin Transfusion Syndrome (TTTS), injures the fetal brain and impacts its further development.
TTTS is a disorder affecting identical twins from fetal life and has serious impacts on a baby's general health resulting in high rates of morbidity (30%). Babies surviving TTTS have a very high risk of abnormal neurological function (20%). This risk has not decreased despite improvements in obstetric and neonatal care in recent decades. Little is known about the evolution of fetal brain injury and its impact on fetal brain development. Care providers have limited means to prevent the injury on the fetal brain.
We will study the impact of TTTS on the developing fetal brain by implementing a novel imaging technique known as quantitative fetal MRI. This technology enables us to detect fetal brain injury in detail, allowing physicians to determine the appropriate timing and intervention for fetuses and newborns affected by TTTS. We will also study long-term neurodevelopmental outcomes of these babies and clarify the relationship of these outcomes to abnormal brain development and injury in fetal life. The findings from this study will provide an efficient monitoring tool of fetal brain development and injury. This will eventually enable physicians to provide useful information to improve long-term neurological health and function of babies affected by brain injury in the womb. This new approach has applications for other types of fetal brain injury, including the potential to detect and manage babies at risk of brain injury before they are born and improve their long-term developmental potential.
In this study, we seek to determine how the mother's immune system can prevent transmission of cytomegalovirus (CMV) to infants during pregnancy. CMV is a virus that can cause a mononucleosis-like illness in adults, but most individuals have no symptoms of infection. CMV exposure is extremely common, as over half of U.S. adults test positive for previous CMV exposure. This virus can be passed to infants during pregnancy and can lead to problems with the infant's hearing, cognitive and motor skills. It is our hope that this study will help scientists better understand how the immune system can prevent mother-to-infant CMV transmission during pregnancy, information that is important to developing a maternal vaccine for CMV.
For more information, email Dr. Permar.
Dario Fauza, MD, of the Department of Surgery, is currently investigating the use of mesenchymal amniocytes to engineer diaphragms for the treatment of congenital diaphragmatic hernia (CDH).
Watch the video below about the graft that keeps on giving.
Participation in this study is anticipated to begin in the spring of 2011. Participation details forthcoming.
Researchers in the Department of Orthopedic Surgery at Boston Children's Hospital, in conjunction with researchers in the Department of Radiology, are interested in better understanding the relationship between an ultrasound image of a suspected clubfoot and how a clubfoot appears following birth.
The study is completed and no longer seeking participants. You may read about some of the findings by clicking here.
In conjunction with the AFCC, specialists within the Fetal-Neonatal Neurology Research program wished to determine how accurately diagnoses made by prenatal ultrasound, prenatal MRI and postnatal MRI agreed with one another in suspected cases of posterior fossa anomalies.
This study is completed and no longer seeking participants. You may read about some of the findings by clicking here.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”