When a child is born with (or develops) physical problems, parents experience a sense of panic: What is wrong with our baby? The anomalies might be obvious or subtle. Sometimes it is only a parent’s “gut feeling” indicating that something just isn’t right. There are few things as frightening as having a baby or child with an unknown medical condition.
When Parents Become Medical Researchers
Many parents find their feet set upon this difficult, frustrating path. They become their child’s own medical researcher, trying to find a diagnosis that matches the baffling symptoms. Along this mysterious journey, their child might receive numerous incorrect diagnoses, sending the family on an emotional rollercoaster of fear, sorrow, and hope, as one condition is disproven, and then another suggested. The journey to diagnosis can take years. And it can become very eye-opening for parents to discover just how much doctors and specialists don’t know.
The Fears of My Past
I have great empathy for these parents. Some time after my son Kyle was diagnosed with autistic disorder at the age of two, frightening things began to happen. Due to some minor physical symptoms present in some of my other sons, it was suggested for a time that all my boys had some mysterious disorder. I was a young stay-at-home mother, with beautiful sons who were intelligent, laughed and played, and didn’t seem sick. But the mere suggestion that there was a black cloud hanging over our family was enough to send me into a frenzy of medical research. I bought books, manuals, and searched the internet. I was terrified of what I might find. The terror ignited the research, and the research ignited the terror.
Recently, when my third son was diagnosed with juvenile diabetes (making a total of two of my children with that disease,) a social worker in the hospital made a bizarre suggestion that in her work she had observed a high number of autistic children with diabetes, and diabetic children with autistic siblings. She said, “I’m sure there must be a connection.” Hearing this comment, the decade-old fears of my past began to boil up inside me once again. Silently I was asking myself, do my children have an undiagnosed genetic disorder? But time and experience has taught me to prevent these seeds of fear from growing wildly. After all, this was not even a doctor speaking. And so what if it were? My children were happy and thriving.
I have some suggestions for parents in this predicament. Although I certainly can’t give the answers you desire, here is some advice I can impart:
1. Approach internet research with a suspicious, open-mind. You can find all kinds of peculiar genetic syndromes over the internet, and some with grim realities. Just because your child has several symptoms associated with a certain disorder, it does NOT necessarily mean you’ve found the answer. Numerous diseases and conditions have cross-over symptoms. Some disorders mimic other ones. And your child may have some symptoms which are not related to one another.
2. Don’t let your life become consumed with the search. Not only will doing so bring tremendous emotional stress to you as parents, but it can disrupt your marriage and rob you of precious family time. You need to balance healthy parental concern for your child with your own emotional health. Your marriage and family, and even your special child, needs you to be emotionally available. Schedule one-on-one leisure time with your spouse, where the medical concerns are not discussed. Devote personal time with your other children. Don’t let this unravel your lives. If necessary, schedule certain times when you’ll do your research. But have the strength to put it aside and turn back to the other aspects of your life.
3. Continue to take your child to follow-up medical appointments, and ask for referrals. Doctors who practice at University Medical Centers often have the greatest access to current studies, information, and research. They are often the most open-minded and know about recent medical breakthroughs. Seek help for your child’s specific symptoms, but keep putting him or her in the path of different medical specialists. Don’t repeatedly take your child to the same baffled hometown physician.
4. Enjoy every day with your special child as a precious, miraculous gift. A child who has the opportunity to experience life, love, and family is blessed indeed. Your fear and heartbreak is understandable, but don’t forget to seek out the smiles, the laughter, and the joy that life brings. Be positive, even if it takes work.
5. Trust that in most cases, a diagnosis will eventually surface. Time usually makes symptoms more apparent, and doctors will eventually put the pieces together. When this answer materializes, you might be surprised that it may not bring the satisfaction you were expecting. And although a diagnosis may uncover the mystery, your child is an individual who may have an atypical case, who might defy the odds, or who might even redefine the disorder. Do not consider your child to be doomed to a certain outcome. Get second opinions, and don’t take too much stock in labels. And never, never lose hope.
Kristyn Crow is the author of this blog. Visit her website by clicking here.
For more information, visit the National Human Genome Research Institute website.