Coping with the Diagnosis of WAGR syndrome
During pregnancy, most parents have hopes and dreams for their child. When the baby is diagnosed with WAGR syndrome, those hopes and dreams are suddenly changed, and we feel shocked and confused.
Parents often feel “numb” for a while after receiving the diagnosis. This is your mind’s way of protecting you from more pain than you can handle. As shock fades, you may experience other reactions, such as forgetfulness, feeling as if you are in a bad dream, difficulty concentrating or denial.
When you are told your child has WAGR syndrome, it is natural to feel sad. Most parents need to go through a period of mourning for the child they expected to have. It will help if you express this feeling, and if the people around you allow you to cry and to talk about how you feel.
Most parents ask, “Why did this happen to us?” and many feel angry. It helps to talk about this feeling too. It is very common to want to assign blame to someone or something. Many parents wonder whether something they did before or during pregnancy caused their child to have WAGR syndrome. It’s important to remember that there is nothing you could have done or not done to cause or prevent this condition.
Not all parents feel guilty, but many do. This is also a natural reaction, even though the fact that your child has WAGR syndrome is certainly not your fault.
All of these reactions and feelings are perfectly normal. They may never go away completely, but as time passes they will lessen. Joining a support group can be a good way to cope with these feelings because it’s comforting to know that others have felt the same way. It can also be helpful to learn from other parents and to share the lessons you have learned as well.
The rate of divorce among parents of children with special needs is thought to be higher than average. There are probably many reasons for this. Men and women often handle crisis differently, and the birth of a child with WAGR syndrome is a crisis. Mothers frequently react with tears and with a great need to talk and express their feelings. Fathers on the other hand may feel the need to contain their emotions by not talking about them. These conflicting needs and coping styles can make each partner feel misunderstood and alone. But simply being aware of and accepting these different needs can be a big help. Couples do need to communicate and a little compromise can go a long way–and can help each partner to have a sense of working together for the benefit of the family. If you find that your marriage is really suffering, consider couples counseling to work through this difficult time. Parents of older children often say that finding constructive ways to weather this crisis brought them closer together.
Children usually take their cue from their parents—if you are positive about the new baby, they will be too. You can explain to them that this new baby may need extra care, and that he may learn more slowly than they do. You can also reassure them that in time, this little brother or sister will be a great playmate and someone they will grow to love. Most research shows that children who have a sibling with disabilities get along well with them and are fond of their sibling. Many adults report that growing up with a sibling with disabilities taught them a great deal about understanding, responsibility, and compassion.
Grandparents can go through many of the same feelings as parents do as they grieve for both their child and their grandchild. Denial of the child’s diagnosis is common, and usually reflects an intense need to believe that all will be well. Whenever possible, include grandparents in your child’s care, and share information with them. If they know that children with WAGR syndrome do best when their caregivers are both realistic and optimistic, they may be better able to accept their grandchild just as he is. A grandparent’s positive and encouraging attitude can be a tremendous asset for a child.
Friends and Others
Friends, co-workers, strangers, and even relatives can unwittingly say thoughtless or hurtful things out of embarrassment and ignorance. Again, most people will take their cue from you. If you are positive about your child and his future, they will learn to be positive also.
This page updated: February, 2015
Kelly Trout, BSN, RN
International WAGR Syndrome Association