Taking the Guilt out of VHL

It was 1966 when the puzzle came together and the word hereditary was used for the first time in our family. At that time my mother, two sisters and brother were being treated for eye and brain involvement. Words can not describe the devastation Mom felt when she became aware she had passed VHL to her children. Four of her five children, three grandchildren, and one great-grandchild would have VHL. Mom was consumed with guilt and grief.

Many of you know the feeling if you are a parent or grandparent of a VHL child. I have talked with hundreds of individuals either on the VHL 800 line, at Chapter and National Meetings, and the Internet and have been asked many times "How do you handle knowing you have given this disease to your child"? We are all individuals with different coping abilities and what works for me may not work for you, but I would like to share my thoughts.

Our two daughters were checked every year by an ophthalmologist, and each time we braced ourselves for the words "I see a tumor." I knew that my role as a mother was to take care of the situation as well as I could and not fall apart. When Tammy was 14 years old, the big question was answered during a routine eye examination when the Doctor said, "There is a tumor." I asked what was going to be done and within a few minutes she had her first laser treatment.

On the drive home, I told my beautiful daughter that I was sorry she had VHL but, that I was not going to feel guilty. I assured her that we would always take care of her and make sure she would get the best treatment we could find. We went home and lived life as normally as possible. I wanted her to know that life goes on and she was still loved, still okay.

My deepest feeling as a parent is to say to other parents when they find out their precious child has VHL, "Do not waste precious time feeling guilty because you have passed the VHL gene to your child." Allow yourself time to grieve, talk it out with someone that can understand how you feel. You can not change the diagnosis of VHL, so you must then accept the news with as much dignity as you can muster and determine to do all you can to help your child through each episode as it comes.

How many times have you said, "I want my child to have the best"? We can do that in several ways: by being informed, having appropriate check-ups, and finding the best medical team possible. A child looks to a parent as their role model and their ability to accept having VHL may depend on how you, as a parent, cope with it yourself.

The most dreaded phone call any of us made was to call Mom and tell her we were going to have surgery. She was a God-fearing person and depended on Him for strength and yet the tears flowed like a river as she blamed herself for giving us VHL. Somehow, I determined that if either of our children (or both) had VHL, I would never make them feel that I could not handle the situation. Just before her first brain surgery in 1981, Tammy told me how proud she was to have me for a mother and proud that I was so strong. I knew then that I had made the right decision!

How have I coped with having a child with VHL? It is hard to believe it has been 22 years since she was diagnosed. Time has been a healer. I received my support from God, my husband Don, and family members for many years. The past five years I have had additional support from the members of the VHL Family Alliance. I asked many questions whenever we saw specialists. I tried to be as informed as possible and provided our medical professionals as much material about VHL as I could find. Now I carry a packet of information with me whenever I meet a new doctor.

I was quick to find another doctor when I did not agree with the prognosis. Tammy was told once that if spinal surgery were to be performed she would probably never walk again. Another time she was told her headaches and neck pain were from strain occurring when diving. Needless to say, we found another doctor that was better informed about VHL and willing to provide the appropriate test to confirm the diagnosis. I spent time writing letters to specialists from Texas to California. I could see the relief on Tammy’s face as I started my campaign to find the right doctor. I succeeded in my search and found a neurosurgeon who has provided excellent care for Tammy and others in our family for the past 18 years.

VHL does make one a fighter! Become an intent listener when your doctor is giving an opinion. If you are concerned in any way, do not hesitate to get a second opinion. The VHL Family Alliance can help you by giving you questions to ask and sources of informed second opinions. Being a very active advocate on my daughters’ behalf seemed to be therapy for me. The more I did, the stronger I became. Between each surgery came time when we could take a long deep breath and try to live a normal life. And with time, it became easier to accept.

Another major factor in being able to cope has been 19 years of taking care of children in my Day Care business. My days are so full and busy, it leaves little time to spend fretting. My goal has been to stay as positive as I can no matter what the situation.

Instead of spending time feeling guilty about something you could not control, focus on what you can do to make life better. There is much to be done to find a cure. After the news hits, pick yourself up, brush yourself off, and be the best parent you can be. Focus on what needs to be done. We are indeed a very large "family" now and we can help keep each other strong. I believe that if we face adversity head on, we can rise above it. If we can learn to accept the things we can not change then we emerge strong. Let time heal your hurt. May we become united in our goals to improve diagnosis, treatment, and quality of life for all of us with VHL. We can then give our children and grandchildren the best life possible.