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Today it's been 5 years since my son Matthew's A.V. Canal repair. I remember the nurses: Shannon, Jaime, and Patrick....They were so good with Matthew and with my husband and I.
If it wasn't for Children's Hospital and the Cardiac wing he wouldn't be here. Thank you all for what you have done for us and giving him a chance to grow in front of our eyes! Thank you Dr. Mah, Dr. Baird, and Dr. de Ferranti we owe you the world.
5 years ago today, I placed my one week old son in Dr. Emani's hands to repair his COA. I remember it like it was yesterday, and I'm thankful every day for the care we received at the Heart Center at Boston Children's Hospital.
1 year ago today Dr Baird performed open heart surgery on Cayman. It did NOT slow him down. Today his heart is as good as new and he barely even has a scar. Thank you Dr Baird and everyone on the cardiac floor at Boston Children's Hospital.
Two years ago today we were at Boston Children's Hospital and our daughter, Emily, was having an aortic stent placed. We were told it would have to be replaced by the time she turned 2 (which was last June) but its still in place and working beautifully. We thank God every day for the amazing work of Dr. Gerald Marx and Dr. James Lock.
This weekend we celebrated our beautiful daughter, Mikayla's 1st birthday and that’s thanks to the amazing surgeons and staff on the 8th floor!! Mikayla was born with a rare diagnosis of Pentalogy of Cantrell which included several heart defects.
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Our Pulmonary Vein Stenosis team bases treatment on the latest clinical research. At Boston Children’s, we have one of the world’s most extensive research programs and our scientists work directly with our doctors so that the newest treatments are always available.
Historically, doctors have had to rely on one of the following treatments to care for children with pulmonary vein stenosis:
open-heart surgery to widen the narrowed veins and improve blood flow from the lungs back to the heart
cardiac catheterization with balloon dilation to try to stretch the vessel(s) open
lung transplantation to replace the lungs and the pulmonary veins
Response to surgery or catheterization is usually short-lived. Typically, within three to four weeks, the obstruction recurs, and repeating surgery only provides temporary fixes.
In some cases, lung transplantation may be an option, but this comes with major risks, including rejection of the transplanted lung and serious infection. Patients must also take immunosuppressant drugs for the remainder of his or her life to help reduce the chance of the body rejecting the new lungs.
Using these methods, many children with the most severe form of pulmonary vein stenosis do not survive past early childhood.
The Dana-Farber Cancer Institute and Boston Children's Hospital are conducting a research study in patients who have multi-vessel (greater than two vessels) pulmonary vein stenosis. The purpose of this study is to determine the effectiveness of using two standard chemotherapy drugs that target myofibroblasts in pulmonary veins and control the abnormal growth of these cells.
The study involves treatment with Avastin and Gleevec, two medications used to safely treat childhood tumors. Multi-vessel intraluminal pulmonary vein stenosis is not thought to be a tumor, but it does share a common feature with tumors: the unwanted growth of cells.
Gleevec is given daily by mouth, while Avastin is given intravenously once every two weeks. They both have low side-effects and have been well tolerated in infants, children and adults. The goal of treatment is to stabilize the unwanted cell growth to improve patients’ life expectancy and quality of life. The trial involves treatment for one year, and can be coordinated close to a patient's home area.
In order for your child to qualify for the study they must have:
Evidence of intraluminal pulmonary vein stenosis in > 1 vessel
Acceptable organ function
Evidence of myofibroblast neo-proliferation, if biopsies were obtained
After initial contact, we will need the following information in order to help determine whether or not your child qualifies for the current study:
Current patient status
Echo CD's and reports
Catheterization CD's and reports
CT scan CD's and reports
Recent lung scans
Please have CD's mailed to:
Attn: PVS team
Boston Children's Hospital
300 Longwood Ave
Boston, MA 02115
Please fax clinical documents to 617-919-3007 Attn: PVS team.
Feel free to contact us at firstname.lastname@example.org or call 617-919-3430 with any additional questions.
Please include your contact information so that we can follow up upon receipt and review of your child's information
You can also schedule an outpatient appointment by calling 617-355-6000.
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