Genetic Testing

I have a friend with nine kids. She trusts that the Lord will 'close her womb' when He is ready for her to stop having kids. I wish I could be that trusting of the Lord's vision for my family. We really do want a fourth, but given that we already have three kids with epilepsy, the odds on having one without are pretty slim. And woe be to the normal child born into our family. I'm guessing an abnormally heavy burden would be on his/her heart as s/he grows up to care for siblings who need it.

I do believe He intentionally put my kids together, either to be with each other, or to be raised by us. When I was pregnant with the third, we only knew that the eldest child had epilepsy. His, was idiopathic, possibly caused by a birth injury or low oxygen during labor. We had no reason to think that the other kids would have the same problem. I didn't have the amnio or Chorionic Villus Sampling, more because I was concerned about the risks than having a strong opinion about the results. My doctors pushed, because I was older, and my father is adopted. I think doctors fear the unknown. I knew the Lord had created these children and I had no cause to worry.

Our second child was diagnosed with epilepsy when she was two. The doctor couldn't believe it. He did another EEG. The shocking part was that her EEG pattern was displaying a type of brainwave that indicated a genetic type of epilepsy. So I have one with epilepsy of unknown cause, and one with an apparently genetic type. All eyes went straight to the baby.

You know how the EEG works, right? You go to a clinic or hospital, get your head wired up and lay in a room for 30 to 60 minutes while your brain waves are recorded. Sometimes you go in sleep deprived, sometimes they ask you to hyperventilate, sometimes they flash strobe lights at you. The technicians are trying to elicit a seizure or seizure response so the patterns can be recorded. It's like taking wildlife photos from inside your house. The cardinals may be outside, but unless it flys by the window while you are holding the camera, you won't get the shot.

Same thing with an EEG, if nothing happens during the recording of the brain waves, the doctor might not have any evidence to help determine if you have epilepsy, much less, what kind. I've been told that there is about a 50/50 chance of catching abnormal brain waves in an EEG. A negative EEG doesn't necessarily mean the patient doesn't have epilepsy.

So, now we have one child with one type of brain wave, a second child with fantastic luck on the EEG recording a different type of abnormal brain wave, and time comes to check the baby. Lo and behold she has the same type of pattern as the second child. It looks like they both have the same type of genetically inherited epilepsy. While the first child dodged the bullet on that, he still developed epilepsy anyway. So of course the recommendation is genetic testing. Why, that would answer so many questions, wouldn't it. Wouldn't it?

After extensive discussions with our very understanding and eager doctor, he agreed that no matter what the genetic testing showed, it wouldn't change the prognosis or treatment of the kids. But I know how I feel about having more kids. I feel broken and sad, and know that I won't have more because I am afraid of having more children with a chronic ailment. As much as I love and adore these people, as hard as I try to not let them feel different, I am still fearful of having more. I don't want to saddle my kids with that knowledge until they are ready to handle it. And what if they choose to not want that information. You can't just put the toothpaste back in the tube, right? So we have made the decision to not have genetic testing on the kids. When they are grown, when they are married, maybe they will make those choices for themselves. But I'm not going to put another label on my kids. Not if it doesn't help heal, help treat, help cure. I just don't see anything helpful about it now.