When there is no answer

Posted on Feb 28, 2014 | 5 comments

A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. “Do you know what happened to May? Has she been seen by the geneticists?”

Photo by Kevin Dunnett

Photo by Kevin Dunnett

She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing.

“How was your labour?” the professor asked.

It was protracted,” I said bluntly. “68 hours.”

“That’s probably it then. But, I could refer you on if you wish.”

“Let’s say I did take May in for further genetic testing and they found something. Would it help her now? Would that information benefit her in any way?”

“No. It probably would just give us more information.”

“Then, I’d rather we didn’t. We’d be testing her for our own curiosity. It wouldn’t be right to put May through that.”

I had another conversation with another doctor, a neurologist, three years ago after an overnight stay in a hospital to trial her with a new seizure medication. We’d been testing her for a year and a half at that point and had found no answers.

I asked him: “How long do we go on testing May? How many tests are there?”

“We could continue to test her forever,” he said. “New tests come out all the time. As doctors, we are always searching for the solution.”

“But, will it help May? If we find out?”

“Probably not.”

“Then, I’m done. I’m done testing her. I’m done putting her through this.”

Sometimes there is no answer. Sometimes life just deals you a bad hand. These doctors meant well, they really did – and it makes no rational sense. In life, we expect answers. But, the truth is they don’t always exist. There is no solution. There is only a little girl with half a brain.

People are always asking me why. Why is she crying? Why is she having seizures? Why isn’t she sleeping? The definition of unbearable should be: when you don’t know why your daughter is in pain.

More information isn’t the answer when no answer exists. It is an awful truth. But, I’ve come to think of it as the only sane approach. Acceptance isn’t about fixing the problem. It is about accepting the problem.

I could shout and scream about it. I still want to demand answers. But, in the end I hope someone will lead me back to my  little girl. That she will be enough. They will take my hand and place it on her head. My little girl with half a brain, a half brained beauty. She is the answer.

5 Comments

  1. Thank you for this powerful yet simple truth.

  2. I think your decisions should depend on how unpleasant and how invasive the testing is for May and whether the disease they are testing for has any implications for Ieuan. More lumbar punctures seems to be a needless cruelty but what about blood or spit?

    Occasionally there are genetic diseases that knowing the diagnosis for can help tailor the treatment of the child- they may respond better to some medications than others of may be at-risk of future complications that can then be regularly screened for. However you are right that a lot of the time there isn’t much benefit from a “full diagnosis”- but it is often hard to tell that unless you know what the diagnosis is!

    I think it also is worth bearing in mind when it comes to mitochondrial diseases or recessive diseases that have the potential to affect Ieuan’s children. It is a very difficult issue because obviously you love May to bits and this sort of genetic testing would have the end consequence of “preventing” a future May being born. So not an easy choice at all. And one that may ultimately be very academic as it sounds like the birth was the issue!

    • May has been tested for mitochondrial and recessive diseases. Genetically there is nothing wrong with her, at least nothing wrong that they can find now. I still feel it is the birth despite the evidence not being there. Most of her doctors think it was something to do with the birth as well. Knowing that, I don’t want to put May through further testing. Though if a new test comes up that her doctors feel would benefit her, I would do it.

      • I’m sure you are right about the birth. A close friend’s niece had many similar problems (although was more severely affected than May and never smiled or laughed or bounced) and it was all from hypoxic brain damage (in her case due to placental abruption before birth).

  3. Well it is true, at the end of the day you deal with what is in front of you, the lovely amazing child. It makes no difference really. I said to the geneticists I was not bothered about a diagnosis, but one came anyway — it happened kind of by chance. My son had had quite a lot of testing, mitochondrial dna and all the most common genetic tests, plus a detailed array test which takes a very long time but does not find everything possible. So….. in our case it was features of my son, an x-ray and various photographs that pinpointed his genetic syndrome, which is very rare. At first I thought, so what, but then I thought, I am glad to know because it could have affected my daughter’s decisions in the future. As it is, the syndrome is caused by a non-hereditary mutation. I have been very very lucky to meet an amazing group of other children and their families with the same syndrome. That’s been the loveliest part. And so, looking back, I am glad to know what the syndrome is, even though I was not at all bothered, and still would be fine not knowing. All it took was one blood test for the dna testing. We have the option now to have the specific test done for the particular syndrome (has recently been developed), but I’m in no hurry. I totally respect your viewpoint on this. Your daughter is so very lovely x

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