6. Infant Girl and HHT

At some point, I feel like I’m going to need to split the two parts of this story like a fork in the road. One will follow the path toward my birth record and birth family, and the other will follow what becomes my new medical journey. That will probably need to begin with the next entry, but for this one I think I can still talk about both without getting too lengthy.

After lunch with Roger and Susan, I had a quick appointment with an adoption attorney. This was planned before the lunch, and obviously before I knew about any new medical history. I just wanted to speak with someone who would have legal expertise as far as my rights. I believed that I knew who my birth mother was and that she had passed away, and I wanted to know if that changed anything for me. I mean… legally, if she wasn’t here to oppose, would I be granted access to my records? The short answer was no. Death of the birth parent alone does not do that, at least not in this state.

But what about if there’s a potential medical necessity, I asked her. I explained what Susan had discussed at lunch. “That may make a difference”, she said. She gave me instructions, and I was out of there. Her office is within blocks of the courthouse and I couldn’t get there fast enough. I parked my car and made my way to the County Clerk’s office where I waited my turn, and was eventually greeted by a sweet young deputy clerk, “Lindsey”. I told her that I needed to petition to open my birth record from 1973, and she provided the form. It was a fresh copy of the same form I filled out in 1994. This time, though, after filling in the blanks, I would add comments at the bottom per the instructions of the attorney.

Before I got started, though, I verified with Lindsey that I had the correct form. “Can I tell you what I’m trying to do?”, I asked her. She nodded, and I told her everything from 1994 to Ancestry.com to the obituary to lunch to that moment- and I told her that now, not only do I want answers, but also am now concerned about a hereditary disease. That sweet girl’s eyes teared up, and she said, “I want to help you.” She told me to get started on the form, while she went to the basement to see if my records were in the building or were old enough to have been sent elsewhere.

While she was gone, I worked on that petition. She was back within minutes, and was smiling. “I found your file”, she said. “And I also found your pre-adoption name. Infant Girl ___”

Oh my gosh. There it was. Lori’s last name. Lindsey and I stood there smiling and tearful, and I could NOT believe that after all these years of wondering, the moment of confirmation ( at least for me) came at the County Clerk’s office window! Ha! But it was confirmed nonetheless. I couldn’t prove it though…she didn’t show me one piece of documentation. She couldn’t. I would have to wait for that. My petition was headed to the state capitol, where a state worker would attempt to reach Lori, and when they couldn’t, a judge would decide whether or not I got the records…and there was no timeline on this. Since I had no proof, I didn’t share this (at least not immediately) with Lori’s siblings. I needed more than this.

That evening, I got online and looked up HHT. Hereditary Hemorrhagic Telangiectasia. It’s a genetic disorder that causes malformed blood vessels, and can affect multiple organs in the body. This is the first thing I read on the cureHHT.org home page. The next heading I clicked on was signs and symptoms, and the first symptom mentioned is recurring nosebleeds. Interesting- I’ve had them for as long as I can remember. Nothing major, I can always get them stopped pretty easily, but they are regular. So much so, that recently I was blown away talking to a coworker who told me that she had never had one. That is unreal to me…I thought everybody got them. Apparently not.

I continued to read, and found that another complication of HHT is migraine headaches- which I have battled for 30 years. This has really got my attention at this point. Then I saw a link for HHT Centers of Excellence. There are 22 in the United States. One of them is at one of the Nation’s top Pediatric hospitals…where I work. What are the odds? Additionally, some of the treatment for the abnormal vessels is done by Interventional Radiologists, and I work in perioperative services. I know some people who might have some answers for me. Sweet!

So, the next time I was at work (maybe the next day, but certainly within the week) I grabbed my favorite Interventional Radiologist, Dr. Manish Patel. We’ve had a friendly working relationship for a few years…everybody on our unit enjoys his relaxed and friendly personality. Anyway, I remember asking him “What do you know about HHT?” And he told me he’s part of the treatment team. Of course. “Why?”, he asked. So I said…”I think I might have it.” And he laughed at me. “Why in the world would you say that?” So, I explained how AncestryDNA linked me to a family that definitely does have it, and that I have nosebleeds. He said “Holy s*%t I could end up doing your angiogram.”

We both kind of laughed at the idea of that, but then I had questions, and was of course ready to put the cart WAY in front of the horse, as I’m often known to do. He explained that I should and would start with some clinical testing, and he would put me in touch with the appropriate people to get that ball rolling.

This is now the part of this story where I had to try to patiently wait. I wasn’t good at it. It would be weeks before I really had answers to any of this, but it wasn’t the last of the surprises.