I created a new page to describe the differences between a normal heart and one like Evan’s… you can see it under the menu item Evan’s Condition or by clicking here.
Category: Uncategorized
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Fetal Echocardiogram today…
We went to the cardiologist today and were officially diagnosed (previous was best guess by radiologist, OB, etc) Evan does indeed have a congenital heart defect but it’s not hypoplastic left heart syndrome. He has a much more rare (1 in 25,000) defect called Tricuspid Atresia with Left Transposition. It’s two parts, 1) There is no tricuspid valve and 2) His left and right ventricle are transposed, meaning on opposite sides.
I’ll be updating the website with new information but it’s going to take a little while as this is much more rare and hard to find information about.
Important to note… this still means lots of open heart surgery for our young one, but it sounds like although it’s more rare, it has a little less risk. Stay tuned.
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Can’t sleep…
The fetal echocardiogram is in the morning, I need to get some rest but I am too nervous. We have seen ultrasound after ultrasound of Evan’s heart but this is the day where we will hopefully learn something substantial about how well it’s working and perhaps get a glimpse into how the surgeries might go for him. HLHS is part of a family of heart defects and its severity can vary from child to child. The biggest issue is of course the substantially underdeveloped left ventricle but that is just one of many things that can be a problem. Size and flow through the aorta, pulmonary artery, and valves are also very important and play a significant role in the surgeries that are to come. I hope we come away with some good news tomorrow.
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Baby Tricky
When my sister was pregnant with her son, she nicknamed him Baby Tricky because anytime one went to touch her belly, he would stop moving completely. Tricky indeed. Well, Baby Tricky is strong in Evan too. Our first ultrasound (the “normal” one) we were delighted to be able to learn he is a he. During the following ultrasound (the let’s-check-on-this-maybe-it-was-an-angle-issue one), the tech tried to confirm that we were having a little boy. Of course, Baby Tricky was tired of all the foolery looking at him and discretely tucked his little legs under his bottom and wouldn’t let anyone see anything. Ok fine. Our third ultrasound (the welcome-to-the-high-risk-club one) the tech changed wands (?) and took 4D ultrasound images of Baby Tricky. We never had anyone offer to do so before nor anticipated getting one ever (personally I think they can kinda look crazy but hey it’s worth a shot.) Baby T. was so over everything by now that he literally had his arms in front of his face, forming an X. Like we were paparazzi and were invading his private space. He had never done that before, so it was odd to see him in that type of position. Needless to say we don’t have a proud 4D ultrasound pic of our little guy, and maybe he is just waiting to surprise us.
Whatever the case may be, Baby Tricky, I hope we can get some good cooperation tomorrow. We have our first Fetal Echocardiogram appointment, and we are under the assumption that we’ll be able to learn a lot more diagnostically about Evan’s heart and how well it has otherwise formed and functions. Please be a brave little boy and let us all take a look at your tiny heart (I think it’s the size of a grape). We all just want to make sure we are doing the right things for you, and we’ll leave you to your privacy when we are all done (by privacy I mean you can return to playing soccer with my colon, so long as I don’t squish you with my pants).
I’ll also see if we can’t get take-home pictures for us to have so we can share with everyone. I know for Will and I, we didn’t fully understand what things are supposed to look like until we could see the comparison of Evan’s heart to that of a fully-developed one. Here’s to hoping for some good news!!
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A little too tight
Dear Evan –
I promise I won’t wear those pants to work again. I know they were a little short anyway, and I thought they still fit ok. But I know that when I sat down at my desk, you disagreed with me every time. I’m sorry the waistband was a little too tight and pushing into your little home. Thank you for the gentle kicks to remind me to move a little so you could have your space. I must still be holding onto some sort of “I’m not really that big” dream. But at the rate you are growing, my son, pretty soon I’ll only be able to wear sweatpants and muumuu’s. That’s ok tho – keep getting bigger and stronger every day. Give me another kick-slap of reality whenever you think I need it.
Love,
Mommy -
Ultrasound #2
It had been 6 days since the first ultrasound, 6 very long days. This appointment was in the morning and Sarah and I both told our bosses that depending on how it went we might not be coming in. We sat in the waiting room for a little while and then we were called back. They did the complete ultrasound again, all the measurements, structures, etc, etc. And again, when it came to the images of the heart, the technician was very quiet and extremely thorough. After she was done she left the room for a bit to look at the images, I assume with the radiologist. She came back in and did some more, then left again. She came back in a third time, this time with the radiologist himself.
The radiologist confirmed our fear, our son had hypoplastic left heart syndrome. I don’t remember what else he said, if anything, it’s all a blur to me. The tech and the radiologist left the room and Sarah and I took a few minutes to compose ourselves before we left. Nobody likes giving bad news especially when it’s about a child. I looked at the technicians face and she too looked like she was about to cry, I put my arm around her on my way out and said thanks for you help, as if she was the one that needed a hug.
I called my boss and told him that I was not coming in. He was obviously very understanding and told me to take as much time as I needed. I was at work a few hours later, I needed the distraction desperately and preparing a boatload of samples did just the trick. I called my mom and gave her the bad news, we didn’t talk long, but I gave her a synopsis of what HLHS was. I am sure she spent much of the rest of her day reading about it too.
I didn’t go in at all the following day, instead I drove to Lansing and spent some time with friends and went to MSU to do some research at their library about HLHS. I didn’t turn up anything at MSU that I could not have found at home, but again it was a nice distraction.
What’s next from here? Well they switched us to a high risk OB, scheduled another ultrasound, an appointment with a genetic counselor, and a fetal echocardiogram.
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Waiting…
Ohhhhh… the waiting game. So we had the first ultrasound, found out it was a boy, and was told that he may have hypoplastic left heart syndrome. The ultrasound was right after lunch on a Tuesday and neither of us went back to work, instead we spent the rest of the day on the internet looking up this mysterious (to us) syndrome, referred to from here on out at HLHS. I will save much of the detail for the About HLHS page but to sum up our fear a quick Google search returned the following, “5-year survival of approximately 50-60%.” Wow, I kept reading, and kept reading. It’s not all doom and gloom, I did find a lot of good resources and a lot of success stories. Again, we were assuming that we were not the 1 in 3000 and the ultrasound, just 6 days away would ease our mind. We didn’t want to worry people if it turned out to be nothing so we did our best to keep it relatively quiet, although that’s not one of my strong suits. 🙁 I did manage to keep it from my family, I really didn’t want them to worry unnecessarily, they are already extremely stressed and I didn’t want to add to it.
Here’s a simple image of what HLHS means. The “purple blood” in the image on the right means that the oxygen rich and oxygen poor blood are mixing in the heart, this is normal in utero, but within several days of birth this pathway naturally closes, at which time a baby with HLHS would go into heart failure.
