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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.
The teenage years are challenging, even without having to deal with chronic illness and transplant surgery. Emotional mood swings and the desire for increased independence can be especially intense for transplant patients, and typical adolescent behaviors may complicate healthy post-transplant living.
While a transplant offers great hope for a longer and more fulfilling life, it poses challenges of its own. Understanding what your child is going through can help you support him or her during this important time—and help you cope, too.
Research suggests that the brain is not fully developed until the mid-20s, and between the ages of 11 and 15, children enter a new stage of cognitive development marked by:
Because of the developing brain, there’s also lots of “in the moment” thinking—teens may have a hard time foreseeing the consequences of their actions. This can lead to risk-taking behaviors, such as substance abuse, increased susceptibility to peer pressure, sexual activity and, in the case of those with chronic illnesses, not taking their medications.
A big part of adolescence is navigating the territory between the security of childhood and the independence of adulthood. Teens often go through a period of egocentrism where they see the world as focused solely on them, or where they don't seem to understand how decisions they make today could affect their future.
You may also notice your child:
Transplant patients must also incorporate physical restrictions, potentially noticeable scars and/or disabilities into their identities. How they do this may depend on when they were diagnosed, whether their illness was chronic or came on suddenly, and how well or sick they feel at any given time.
It can be extremely stressful and overwhelming for your child when he finds out he needs a transplant. He may feel:
They may also feel threats to their sense of independence, and have trouble incorporating the idea of “transplant patient” into their growing identity.
Being on a waiting list is a difficult time for patients and their families. Travel is restricted and steps need to be taken to make sure you can get to the hospital in time when an organ becomes available. It’s not uncommon to feel that your life is not your own. Depending on your teen’s situation, she may:
Getting the call that an organ is ready is a time of incredible relief—and anxiety, too. Remember that even after receiving a call, the transplant may not take place because the organ may be damaged or not as good a match as hoped, or because your child is too sick for surgery when it becomes available. This can cause significant disappointment, frustration and anger for your child and family.
Immediately after the transplant, medications and the recovery process could lead to temporary mental changes, causing your child to wonder if he or she is “crazy.” He may also feel anxious about leaving the hospital when the time comes, overwhelmed by idea of their new self-care routines.
Most transplant recipients experience extraordinary relief immediately after the transplant. Later, as the honeymoon period ends, the reality of living with a new chronic illness sets in. Recovery is a gradual process, and your child may feel disappointed by the pace or frustrated by setbacks. They may also show an increased interest in learning about the donor and feelings of sadness and guilt about the donor and donor family.
As your child begins to feel better and gets back to his or her regular activities, there is a risk that he or she may choose not to take his meds. This is called “non-adherence,” and may happen for several reasons:
Your child may also feel:
If the person who donated your child’s organ is living, your child may feel:
After your teen's operation, your support and understanding are very important. A transplant is an intense, stressful and emotional experience for both patients and families, and sometimes this can strain communication. Remember that good communication goes both ways:
Sometimes what a teen needs most is simply to feel understood.
Here are some other ways you can support your teen before, during and after the transplant:
Your child’s transplant team is here to help. Please contact them with any questions you have.
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.”