What to do when your child is diagnosed with a serious medical condition

It’s every parent’s nightmare.  Your child is diagnosed with a serious illness or medical condition.  It’s natural to be angry about the situation, wondering why does your child have to face this condition.  You might also feel guilty, thinking that you did something during the pregnancy to cause the illness, or perhaps you are being “punished” for something you did and your punishment is to see your child suffer. 

The truth of the matter is that illness happens.  If you are a religious person you might find some explanation or consolation in your beliefs.  No matter your beliefs or feelings, you are going to have to face the fact that your child has been diagnosed with a serious illness or medical condition and you need to do everything in your power to help your child.

My husband and I adopted our children in 2006. Going into the adoption we knew that one of the children had a serious congenital heart condition. We didn’t understand it completely, but we knew we would be in for possibly a rocky ride. Our other child was, from all appearances, pretty healthy. There were a few minor issues that needed to be addressed, but we knew about them and had a plan in mind as to how to address them. We never thought that our child would be diagnosed with a Spina Bifida birth defect.

As a reader you might wonder how we went through the adoption process without knowing about this condition. Our children were adopted from Russia, and the nature of his birth defect was subtle. His neurosurgeon assured us that the doctors in the rural region where he was living in Russia probably didn’t have the medical sophistication necessary to catch the birth defect.

Spina Bifida, in simple words, is the name for a group of congenital birth defects of the spine. It is also known as a neural tube defect. A neural tube defect is a birth defect that results in the incomplete or malformation of the brain or spinal cord. The birth defect that my son had is a tethered spinal cord. The nerves at the bottom of the spinal cord are supposed to hang free. In my son’s case, they were tethered (or stuck) inside a fatty tumor known as a lipoma. The nerves needed to be freed (or de-tethered) as soon as possible. If we did not have the surgery performed, my son would begin to lose nerve function below the waist, beginning with his toes. Any nerve damage sustained would be irreversible. The loss of function would move up his legs and then start to affect his bladder and bowel function.

Our pediatrician noticed a triangular, fatty mass at the base of my son’s spine. It was located, to be crude, right above the split in his buttocks, a triangular shaped area. She was suspicious of it and sent us off for testing right away. The initial testing was inconclusive so we were sent to get an MRI of his spine. The results of that test led to our referral to a pediatric neurosurgeon. We went to a hospital in Philadelphia for his evaluation. We were seen on a Monday; the neurosurgeon wanted to operate on him on Friday. We did have to delay the procedure for two weeks to get the necessary pre-authorization paperwork completed for the insurance company.

My son was operated on at 22 months old and made it through the operation like a trooper. He was discharged from the hospital a day earlier than anticipated because he was doing so well. Within a day or two at home he had figured out how to use one of his push toys as a walker and was walking again. Today, at age 5, if you didn’t know what he had been through you would be surprised.

From my experience with both my children, I have learned that for the most part a doctor won’t volunteer information for you, especially if the information is not positive. It is up to the parent to listen to all the information, ask the right questions, and then be assertive in following up with your child’s care.

This past year we switched specialists for my son. The new neurosurgeon told me a few things that were not shared by the first doctor. Now I am not saying the first surgeon was negligent; he merely did not share the entire story with me about what can happen with my son. I was floored when I realized what kind of side effects my child can possibly suffer because of this birth defect.  I thought we'd only have to look for signs of a relapse with the spinal cord.  We also have to be concerned with orthopedic and urological problems too.

As hard as it might be, if it comes about that your child is diagnosed with a serious illness you need to put aside your emotions. You need to become detached from the situation, in a way, so you can find out the information you need to know and to determine with the doctor what the best course of treatment will be for your child.

This sounds contradictory. I came home from the first appointment with the neurosurgeon and went immediately online. There wasn’t a lot of information about his condition. About a year after his surgery information became available online that gave his condition a name – Tethered Spinal Cord Syndrome. The information that I did find was at times vague, at times too clinical to be understood by a non-medical person, and at times downright scary. I would walk away from the computer and expect the worst for my child.

Doctors will give you a starting point with the diagnosis. It is up to the parent to try and find out more information. Knowing what I do now, here is how I would have approached the situation and the questions I would have asked of the doctor:

• Does this condition have a name? What is the name, and how do you spell it?
• Do you have any literature about this condition? If not, are you aware of any place where I can go to get more information?
• Are there any support groups for families dealing with this diagnosis?

And once these questions were asked and answered, I would follow up with the physician and ask if I could call him or her later on (in a day or two) with questions after I’ve had a chance to review this information and learn more about this illness or condition.

Once you find out the basics of the condition and what generally is the course of the illness/condition and how it is generally treated then I suggest you stop researching online. After you learn the basics then you will be bound to find some horror stories on the internet about this condition. Chances are good that your child will not suffer the same fate or have the same course of the illness, but these horror stories creep into your psyche and affect you deeply. This is the reason for my subtitle – research the illness or condition, but don’t research too much.

Don’t be afraid to ask questions.  Of course you aren’t going to understand the exact medical nature of the condition – you are not a doctor.  Be sure to ask any questions that come to your mind about the condition, no matter how small or silly they might seem to you.  The doctors have experience with these conditions and know them inside and out.  Your doctor might not think that something is critical to know but it could be the very thing you are wondering or worrying about.  You are not wasting a doctor’s time.  The parent, as the advocate for the child, needs to have all of his or her questions answered.

As I go back and think about my son and that initial meeting with the neurosurgeon, I think about many questions I should have asked.  I think I was just numb with the shock of the situation that I couldn’t process everything.  What would I ask if given the chance again?  Here are a few questions:

• What kind of long range implications are there for my child?
• Are there any signs or symptoms I need to be aware of that would indicate my child is suffering a relapse?
• What is the chance that my child will suffer a relapse?
• What happens if there is a relapse?
• How long is the recovery from the surgery?  Will my child suffer any ill effects from the surgery? 

There are times during your child’s illness that you may need to become assertive, aggressive or even argumentative to get what you need. I always start off with the belief that you get more flies with honey than with vinegar, but I’m not afraid to do whatever I need to do for my child. You might have to spend time on the phone with your health insurance company trying to get services, tests, or second opinions covered. Don’t stop your pursuit if you hear no. Ask why the insurance company is saying no. Do you need to provide a letter of medical necessity to them to get the services covered, for example. Never, ever apologize for putting your child and his or her needs first. The people you are talking with are doing a job. Dealing with your child's medical condition is your life.

I hope that by sharing a bit of my story I can provide some help for a parent who is facing a recent diagnosis of an illness or medical condition with a child.  Don’t be afraid to ask questions, don’t be afraid to stand up for your child, and don’t ever apologize for being concerned for your family’s well being.