Transitioning from a Teen to an Adult with Sickle Cell

What happens when your child becomes an adult? In most hospitals, once the child becomes 21, he/she is no longer admitted into the Children’s Hospital, but directly speech on pollution in english into the main hospital and the adult population. This period can be very difficult and harsh for the youth, because instead of the warm bubble of support they are used to, they are now stripped of all that support and essentially are thrust into a whole ‘nother world, one which many are ill prepared for.

The pediatric programs across the country are flourishing, but the adult sickle cell programs for the most part are broken. Pediatric programs have outings, support groups, camps, and much more. Adult groups have support groups meetings, and a yearly retreat if you are lucky.  Some pediatric patients see their pediatrician even  after they turn 18, and some even beyond 21. In many, the adjustment is not made properly and the youth suffer many repercussions because of this.  The focus of my project is helping sickle cell warriors ages 16-21 successfully transition into the adult population. My transition was not difficult as most are although I have seen very difficult transitions with very bad outcomes.

The goal of a parent is to prepare your child or youth for independence and success as an adult patient with sickle cell disease.  Your teen will leave home eventually, they will grow up, and as a good parent; you want them to be well prepared.

There are many reasons why youth and teens have difficulty transitioning into the adult system, and the first part of this series will explore some of them. What makes the transition from a child with sickle cell to an adult with sickle cell is:

• The lack of support young adults received from their support group, compared to what they received previously.
• Actually having to talk to the doctor when in crisis (when their parents did this before)
• Lack of decision making skills, because their parents did this previously
• Lack of knowledge about their illness.
• Parents who are pushy and unable to let go.
• Physicians who will only talk to the parents, and not the teen
• Taking responsibility for their care: Young adults think if they feel good they don’t need to keep their doctors’ appointment, or the specialist appointments. This happens often with college students and those in their twenties.
• Loss of insurance as they become an adult.  My daughter although in college was unable to be covered by our insurance once she reached a certain age. President Obama has changed this, but it has not happened yet. It’s a part of the health care plan.
• Lack of self confidence and maturity.

Knowing these reasons, take a moment to think about how you can you help your child become more successful?

Editor’s Note: **For starters, education is the most vital part of the transition. Your child should be as knowledgeable as the disease as you are, especially the older they get. You need to instill in them the fact that they are the ones with sickle cell, and not you. My mother always used to tell me, “One day Tosin, I am not going to be around to take care of you. What are you going to do then?” This statement in itself gave me the wherewithal to want to learn more about sickle cell, because I knew I was going to move out, leave home and go off to college one day.

There are teaching moments in all the interactions you have with your children. You might be used to cooking healthy meals for them, but are you discussing the reasons why? Have you explained all their medications to them and why it’s important? Although your teen might scoff at you and say, “Mom, I already know that,”, you still must press on and teach them about the intricacies of this disease.  They must want to learn, because without that desire, they cannot be self-empowered.

For more tips, check into the 2nd part of the series. April will conclude with insightful and successful transition tips.