Ever wonder about the issues facing pediatric aHUS patients as they become 18 years old and transition into adult treatment settings? Donna Kolp details her family's experiences as her son Jonathan graduates high school and moves into adulthood, focusing on the issues that parent and child encounter as decision-making and advocacy shift and a new care team of adult-oriented physicians and medical personnel replace the familiar pediatric care team.
On June 15th, 1993, we heard these words, “Your son has atypical Hemolytic Uremic Syndrome.” Our son Jonathan was only 8 ½ months old. That day began our long journey. I never allowed myself to “peek” behind the closed door we call the future because, quite frankly, I was scared. Everything that Jonathan did was a milestone. Not your typical childhood milestone, but the kind of milestones that you pray to God your child has the time to make. Jonathan spent most of his childhood in and out of our children's hospital, fighting relapses and finally ending up on dialysis. Every time I would try and protect him from the bad, nothing short of a song and dance. I would try and make his hospital stay not so scary. Child life specialists would come by and offer crafts for Jonathan to make. He would get special visitors from Barney, Mickey Mouse, Minnie Mouse, and his favorite, Goofy. Famous athletes would also come by, and give him autographed pictures with a special note to “Get Well Soon”. Photos taken with the Stanley Cup, with Tony Hawk - you name it, Jonathan was able to experience it. It helped lessen the frightful pokes, lab draws, and in our case, weekly plasma transfusions. We all know the drill, with doctors setting up conference time to discuss all the horrible outcomes of this disease. Then, as parents, having to internalize the information we receive and greet our child with a smile and an “everything will be okay” look. We did it. We were able to put on a smile because we do everything we can to make sure our children feel safe and to believe that yes, everything WILL be okay. I never in a million years imagined that 20 years later, my son would be the one smiling at me, and telling me that everything will be okay.
When Jonathan turned 18, we were faced the care team’s statement that “he is no longer considered a pediatric patient”. Okay, so what does that mean? Well, it means that my child is now an adult. Wow, I was unprepared for that thought. With no guidance, we had to make some decisions, and I was no longer in charge. The main guy in charge? Jonathan. Unfortunately, there were many things that we had to do, and learn, by trial and error. Thankfully, we made it through the beginning stages, and I would like to help anyone who will be facing this exciting, but trying time.
First, a few items that should be done BEFORE that age of 18 occurs:
♦ Start talking with your child’s doctors when your son or daughter reaches the age of 16. Ask for contact information of adult hematologists who specialize in such cases, and are able to administer Soliris (eculizumab). I flat out asked Jonathan's pediatric hematologist who she would send HER children to for care. I also asked Jonathan's pediatric nephrologist who he recommended. If you have several specialists that you deal with such as a gastroenterologist, neurologist, or other doctors, ask for their recommendations as well. I wanted Jonathan to have doctors within a certain network to work TOGETHER in his care. Since our son is on dialysis, his nephrologist is the lead physician that runs the show. If he wasn't on dialysis, then the hematologist would be in charge of leading the care team.
♦ After we received several names for adult physician referrals, I did follow-up research myself, and had Jonathan get involved in this aspect. Since this is Jonathan's care we were planning, I wanted him to have control over who he chose. We looked up their information on http://www.healthgrades.com/ . I made sure that Jonathan knew that he could "interview" these doctors. I also had to make sure that they were willing to take on an "Ultra Rare" disease case, as some physician are not.
♦ If you are fortunate enough to have a "transition" team at your children's hospital, you are that much better off. Our children's hospital did not offer that option, at least not one for such specialized areas as"Chronic Plasma Infusions" or aHUS. You can find out information on transition team resources through your social worker or child life specialist.
♦ When Jonathan was around 11 years old, we began discussions with him regarding what he knew about his disease. We explained to him the aspects he didn't understand, and encouraged his questions. We also told our son that if he ever had any questions for his doctors or nurses, he could ask them anything. We made it clear that no questions were ever stupid or wrong. This knowledge base and comfort level made the transition easier for him and made Jonathan feel comfortable speaking to others about his disease and his care.
♦ While this may open very sensitive subjects, prepare your child for questions that may arise from the ‘adult side’ of social work interactions. Explain carefully terms such as DNR (Do Not Resuscitate) and suicide, as these are questions that may be asked on adult forms or in interview situations. If it helps, ask your Child Life specialists about explaining these sensitive subjects to your child. Personally, our family was most comfortable with frank conversation at home regarding these things.
When your child becomes an adult at the age of 18, you will need to have some forms signed called ‘Advanced Directives’. This gives your child the opportunity to designate you or another family member the legal recognition for Medical Power of Attorney. You can have this document notarized at your bank for free. I advise you to carry this with you at all times and to make a copies for your hospital and doctors.
These steps will help to insure a smooth transition as your child moves forward into adult care settings. I am not saying it will be easy because, let’s face it, you have been in charge all this time. I had to do some soul searching and pray for guidance, as it’s been very hard for me to give up control. Really, coordination of choices and direction in care was the only aspect of Jonathan's medical world that I could control throughout his childhood. I had many conversations with Jonathan telling him to bear with me, that this is all new, and that we are a team. That will never change. What does change is the fact that now he has a ‘say so’ in his care. It is empowering for him. We are still working through this. I have made it clear to Jonathan, that I will always be involved in his care; now, instead of being the driver of this ride we call life, I am now the passenger.