I worked on my “Letter to NICU Parents” for a few weeks and even after I wrote it, I read it about 20 times. Then, something jumped out at me. I left something really important out. A feeling that I felt then and occasionally still haunts me. A feeling I’m sure lots of new parents in NICU feel. (And probably some people who are years into the journey).
The idea that I must have done something wrong for this to happen to my child. Not necessarily Karma coming back to bite you, (although I think some people go there as well). But, when you learn that your child has a congenital anomaly or some kind of change in their gene structure, you immediately feel like it’s your fault. After all, it’s genetics, right? And genetics are passed on, so it must mean it came from you.
New parents, I want you to know that you didn’t do anything wrong. You didn’t do anything to “deserve” this. These things just happen and its just the right combination of genes and circumstances.
I remember sitting there in the NICU not wanting to tell anyone what was going on because they would automatically assume that I didn’t take care of myself when I was pregnant or that I had done something that wasn’t safe. In reality, I took better care of myself while carrying Braxton than I did when I had my older daughter. I ate better, drank less caffeine, drank more water, exercise – eh not so much, but overall I did a better job.
I remember talking to Joseph and over and over he said it was his fault. He felt that maybe his job exposed him to radiation and he brought it home and passed it on to his son. He works in the oil field and while radiation exposure is possible, it’s really not much worse than what we are subjected to every day. He thought maybe it was due to his past battles with drugs, but other than alcohol, he hadn’t touched a drug in years so there was no way possible that could be the cause.
Then, finally, a few months after our NICU discharge, we got an appointment with the geneticist. Talk about a guilt trip. The first genetics appointment can be a little intimidating. They want to know EVERYTHING and I do mean everything about your life story. They want family pictures of anyone who might look like your child, if anyone had any congenital anomalies in the family tree, heart conditions, if anyone had a stroke under the age of 50, medications you took while pregnant, any traveling you did, and it just feels like the barrage of questions never ends. By the end of it all, you’ve got a list of everything on your side of the family and everything on your significant other’s side of the family, and whether you want to admit it or not, subconsciously you look at the list and compare it – who has more things “wrong” with their family? Who did this come from? Is it my fault? Is it Dad’s fault? Which one of us has the faulty genes? Is there something I could have done to prevent this? Wait, Is it the doctor’s fault? Should he have seen something in the ultrasound? The internal questions never end. You go on with your fears and your uncertainty. You try to hush the voices and just be grateful for the little boy or little girl you have in front of you, but the guilt lingers.
Guilt is like a ticking time bomb. Just sitting there, stirring at the back of your mind, waiting to cause a fight.
When our geneticist finally told us she wanted to move forward with Whole Exome Sequencing I just knew this was going to give us the answers we needed. When the counselor explained WES only provides a clear diagnosis for about 20% of those who are tested, that confidence wavered. Four months of waiting was excruciating. After 18 months, what’s another 4? But, when you are waiting on test results, it’s like the last hour right before you are supposed to get off work for vacation – it. takes. for-evv-errrrr. It feels like an eternity. And again, subconsciously you hope it eases the guilt.
Our appointment to discuss results finally arrived 4 months after testing. We were nervous, we were shaken, we were scared. We could finally have an answer or know a whole lot of nothing. Genetics is an area that is really difficult to understand. There isn’t really a cut and dry kind of situation. There seems to be a lot of gray areas. We received our report and as the geneticist went through each of the variances, that imaginary checklist came back. Variance number 1 (blah, blah, explanation, blah, blah) Mom is also a carrier. Variance number 2 (ugh that’s one for me, blah, blah) Mom is also a carrier. Variance number 3 (crap, it’s all my fault, I knew it was, blah, blah) Mom and Dad are carriers. Variance number 4 (ugh, he’s going to hate me, blah, blah) Dad is a carrier. Variance number 5 (ugh, now he thinks it’s all his fault, blah, blah) Dad is also a carrier….and so forth and so on until we finally reached the end of the report and both stared blankly tallying up our imaginary checklists.
Then, the geneticist finally goes on to say that these particular variances are what they call “Variances of Unknown Significance.” Genes that are known to cause deleterious conditions, but since mom or dad are also carriers it could just be the gene passing down without any issues or there could be issues later, she couldn’t really say for sure. There was one gene that neither of us were carriers for and it was the one gene that explained all of Braxton’s issues. This variance is known as a de novo mutation, meaning new, meaning that no one in our family is a carrier, meaning that it was no one’s fault, it’s just something that happened. The geneticist also explained that every single person in the world has gene variances. If they performed WES on anyone, a whole list of genes would show up even in “perfectly healthy” people. This is that gray area. Some genes require that both parents be carriers in order for a disorder to appear, but how do you know that before you have a child? Are we supposed to just go around performing genetic tests on everyone before they have children? Sure, might seem like a good idea, but it’s not logical.
The fact is, there are lots and lots of babies who are born without any issues who carry all sorts of variances. And then there are some babies who have just the right variance to cause things to be not quite right. Is it fair? No. Is there anything you can do about it? Well, not really.
For future children? Maybe. Once you learn of a genetic variance, you can find out if it is something that can be passed on or if it is something that is a one time deal. For us, we know we have a less than 1% chance of having another child with Rubinstein-Taybi Syndrome. But, we also know that we are both carriers for a gene that causes deafness, so it is likely if we had another child that they would also have hearing problems. Likely, but we are not completely certain. Herein lies the issue with genetic testing. How much is too much information? Do we really need to know all of the genes that are mutated? Does the doctor have the right to withhold genetic information that “we don’t need”? But, those are all questions for another topic and another day.
We are grateful for the Whole Exome Sequencing. It gave us the answers that we needed. I know that it doesn’t work that way for everyone. Some people just get a list of genes and the doctor says “Well, here are all the variances we found, but we aren’t really sure how that fits your child’s picture” Say whaaa?? Those parents are still left in the dark, still searching for answers, still blaming themselves or looking for someone to lay blame with. To those who are still searching and to those who have found answers, I have to say – stop blaming yourself. Stop blaming your significant other. There is nothing you could have done differently. You might think you could have chosen a different partner, but who is to say that would have changed anything? Perhaps you would be fighting a different battle? A bigger battle? You never really know and playing the “what-if” game gets you nowhere. Just angry and alone.
So, to all the parents in the NICU (and even some of us veterans) take a deep breath and let it go. Yes, it is easier said than done, but you have to let it go. Let the guilt go. You are not a bad person, a bad parent, someone karma was after, someone God was after – nothing could have changed the circumstance. Let go of the guilt so that you can move forward.
It is not your fault.