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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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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.
This information is also available in our brochure, Taking Charge.
Transition is a normal part of life. At some point we all transition into new jobs, schools, circle of friends and so on. Change is a natural and exciting part of becoming an adult.
In the medical world transitioning often refers to the point when a teenage patient begins assuming more responsibility for his or her own healthcare. Just like in real life this transition is an important sign of growing-up, especially for patients that have received transplants.
You and your parents may be nervous about you taking on your own healthcare. It's a natural reaction, but remember they and other important adults in your life will always be there to help you become an independent person.
Managing your health—including the health of your transplanted organ—is important for living a long and happy life. Learning this skill takes many years. Taking charge of your own health is a journey that your transplant team will encourage you to start at age 12. That way, by the time you're in your late teens or early 20s, you'll be ready to care for yourself. This includes choosing a transplant center that specializes in adults, and checking in with that team on a regular basis.
Your transplant team wants you to succeed in becoming an independent adult managing your own health. We'll give you all the tools you need, including:
But the most important tool we can give you is our time. When you come in to see us for your clinic visits, ask us lots of questions ... and listen to the answers! That way, you'll become the expert.
We're not the only ones who want to see you grow into an independent, health-smart adult. You are on the mind of a lot of people.
The map above sums up the idea: You and your health are the main focus of a team of people—that's why you're in the middle. Throughout your life, there will be important people to guide and support you. Becoming an adult doesn't mean you lose the support of these important people. It means you take control.
If someone asked you who you work most closely with on staying healthy, you'd probably say, "First my parents, and then my transplant team." It's true: The transplant team has cared for you before you received your transplant, and has worked with you and your family to keep you healthy since. In the years ahead, we we'll make sure you have all the information you need to be the expert on you. That way, you'll be able to tell the medical professionals you see as an adult how they can help you in the best way possible.
The transplant team you see now will miss you when you become an adult. By then, though, you will have needs and questions that adult teams can answer better.
The clinic visits you have from the age of 12 on will include some new steps:
At the end of the road lies young adulthood. By then, you'll be able to:
At the end of the transition road, you'll be an adult who has taken charge of all your healthcare needs. You will have a working knowledge of the specialized healthcare that you'll require throughout your life to take care of your transplant. You and your pediatric transplant team at Boston Children's Hospital will celebrate your success.
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.”