Recently, I’ve talked a bit about this pregnancy, and the genetic disorder I share with my 2 sons, and potentially this baby as well. What I haven’t talked about yet, is my 8 year old. My birth son.
Each child I have, I learned, has a 50/50 chance of inheriting this brutal disease. We know I have it, we know my 5 and 3 year old have it….but we don’t know if my 8 year old birth son does. I have been open and honest with his adoptive parents about EVERY aspect of this all along the way. When they consulted with a geneticist a few years ago, the doctor decided it “wasn’t necessary” to test him. I disagreed, but it wasn’t my place. I shut my mouth, and kept my thoughts to myself. They didn’t understand the severity or the risk.
Within the last few weeks, I have reached out again. Again, I asked about genetic testing, and if they ever did formally test him. They said they didn’t, and I gave them more information about the disease, about what we go through, and about how it progresses. Trying to inform them as much as possible. I think now, they are more aware and understand of the true risk of this.
A few days after that conversation, they texted me again and asked if I would “ask my doctors if they thought it was necessary to test him”. Well, I certainly didn’t need to ask anyone, and I replied:
“When I spoke to the geneticist she told me that there is a 50/50 chance that with each child I have it can be passed to them. It’s autosomal dominant. Personally, I would definitely get him tested and all of the doctors I have spoken to agree that any children I have (now or future) need to be tested for it sooner rather than later. I’m getting an amniocentesis on Monday to see if this baby also carries the gene because the doctors think it’s significant enough to not wait around to test. With me, my symptoms were largely ignored and overlooked and I didn’t get a lot of treatment I should have until much later in life, which has made harder for me. Especially with the risk to their hearts, I think it’s definitely worth at least knowing. Even if he doesn’t have “obvious” symptoms, if he had the gene, he should be followed by cardio.”
They seemed greatful for the information, and hopefully now, they are going to get him tested. Honestly, that is such a enormous relief to me. I just want to know. I need to know.
For years, all I have wanted to know is if I burdened my son with this same genetic disorder that my other 2 boys have. Not knowing has pained me so, so much. Not knowing if he has symptoms, pain, things being overlooked like it always was with me…
I’ve never “regretted” my decision to place him for adoption (except for every single day of my life thereafter), but this thing, this fact…this not knowing if he has this thing that can kill him…..it is the one thing that has truly made me question if he really might have been better off with me.
Maybe if he were with me, I would’ve picked up on the symptoms like I did with my 5 year old when he was an infant. Maybe if he were with me, I could’ve gotten him the help he needed, if he needed it.
I don’t know if he has it or not. I don’t know if he has symptoms. It’s been my biggest worry and regret for all of these years. Knowing I have a child out there….not knowing if he shares the gene that has ruined the lives of my other 2 sons…and possibly this baby I’m pregnant with…I need to know.
We don’t know the lifespan of my boys. It’s…if they live until they are 20, it will be miraculous. The limited data suggests they won’t make it into their second decade. And all I want is for my sons to meet their brother at some point in their life.
And if my birth son has it too, that makes the timeline feel even more…rushed. I might not have the luxury of time on my side. I might not be able to just…wait until he’s older. Have a relationship when he’s older. Because there is a very real, a 50/50 chance, that that just might not even happen, getting older.
I don’t know if he has this, and I don’t know if his parents will opt to test him. Our last conversation suggested that they will, but I don’t know. And if they do, I don’t know that they will share that information with me unless I asked, which I don’t want to do again.
Adoption sucks. Even in the absolute best case scenarios, it still sucks, and it’s painful. It’s painful in ways you could never imagine or dream of. This is just another way it hurts. Questions unanswered, not knowing, wondering if he would have been better off with me medically…it’s…it’s all just so hard.
I should be getting my amnio results any day now. I’m hoping I will today. I keep having nightmares about it, that he’s tested positive for it as well. Not knowing is so hard.
But knowing is even harder if it’s an answer you don’t want to hear. I just wish that my kids were okay. It hurts me so much knowing that this is because of me, that I have this to them. And that I suffer from it as well.
Even still, knowing is better than not knowing. No matter what.