Emma Brown: Welcome back to Real Moms Real Stories Real Savvy. I'm Emma Brown.
Rayme Cornell: And I'm Rayme Cornell.
Emma Brown: Rayme, do you remember this photograph that was taken about ten years ago of a baby who was being operated on, was still in his mother's womb, and he literally poked his little hand out into the world and grasped hold of the surgeons finger. Do you remember that?
Rayme Cornell: I do remember that very vividly and one of things I thought about is, Wow! How does that mother feel?
Emma Brown: I know, I know, it's quite an incredible thing to go through and our next mom that we meet had to go through this very same thing and her story is both heartbreaking yet so full of hope at the same time. Let's take a look.
Andrea Merkord: I went to just a regular 16-week checkup with my doctor and she told me that I measured big and I thought okay. You're supposed measure about 16 centimeters and I was 21. So I measured about 5 weeks bigger that I should have and she scheduled me for an ultrasound the next day. We thought okay, maybe there's twins and we went to that ultrasound and ultrasound lady scans across my belly a couple of times and she immediately says, Yup! There's two, because she sees two sets of feet and goes across the rest of that. She was very quiet for a couple of minutes and then she says, Well, I see three heads, but only two bodies.
Dr. Michael Harrison: Andrea Merkord had a very unusual situation in which she had three fetuses. Two of them were conjoined fetuses and they were conjoined in such a way that there is no possibility of either surviving and these two were a grave threat to the otherwise normal third fetus.
Andrea Merkord: Thomas was pushing extra blood over to the twins and his little heart was trying to keep up with all this extra blood flow. There were basically three options. One, terminate the pregnancy, and I just started crying immediately, because we just had been watching them moving around for three hours and it was just a terrible thought. The second option was, you could have fluid reductions to keep going basically like glorified amniocentesis and go in and pull out the large volumes of fluid around Thomas which would most likely rebuild and they would have to continue to do that. The bigger problem was that the conjoined twins' heart was failing and they were dying. So, since they were sharing blood with Thomas, when they died, they would take him with them. The third option was to call San Francisco and see if we were a candidate for surgery that would separate the sharing of blood between all of the babies.
Dr. Michael Harrison: We could do this thing that we were developing at the time, which is Radiofrequency Ablation, and stop the circulation in those and thus protect the good fetus.
Andrea Merkord: So we went ahead with surgery and just prayed -- prayed before that surgery. That was a decision to save a life. That wasn't a decision to terminate. We just understood it's what had to be done. It was the only option.
Dr. Michael Harrison: We could stop the circulation in the fatally flawed twins without interfering with the normal one. That's not always the case because you can have things go wrong as the blood crosses, but it worked.
Andrea Merkord: We came home after the surgery, basically at this point trying to treat it just like a regular pregnancy. We went in for an ultrasound a week later and found out that there had been a membrane separating the two sacs, and that membrane wasn't intact anymore, it was just free-floating and created a completely new problem.
Dr. Michale Harrison: She developed Amniotic Band Syndrome. So she first had conjoined twin twin-twin transfusion. That's enough for anybody and now she had Amniotic Band. The Amniotic membrane can actually do things to a developing fetus and a reasonably common thing for it to do is to wrap around and then it becomes like a tie, and that tie can be quite devastating, because as the kid is rapidly growing, the tie stays the same size. That tie band can do damage all the way from minimal to amputation. We had hypothesized and actually studied in animal models the possibility that we should go after an Amniotic Band in order to save an extremity. So she had to come all the way back. Imagine going through this again and have another procedure which was completely unique at the time. She was the first one that we did it on.
Andrea Merkord: He seemed strangely excited. He had actually said, we've been wanting to try something like this. We want you to come down here. We want to see what we can do.
Dr. Michael Harrison: We put a little telescope in, find the band and cut the band. So we were able to do that for the first time so she had like two first-time fetal operation procedures. Fortunately, that was successful.
Andrea Merkord: We had a lot of family support. There was a lot of people calling everyday finding out what's going on, what's the new news and check in on us. Thomas came on his own, breathing on his own, had ten fingers and ten toes. He was beautiful. Those physicians are constantly searching for new things they can do. It was neat to kind of see that side of it. I think, it's amazing.
Dr. Michael Harrison: There are a couple very interesting movements in the field of fetal intervention over the last decades. One of them is very obvious, they move from invasive surgery -- cut -- sew -- to Fetendo surgery with telescopes and then to Image-Guided surgery mostly with Sonograms. So less and less invasive, safer and safer, and you can apply it to more kids. For the future, what's being developed now is very exciting. Not so much for anatomic problems as for inherited and physiologic problems like stem cell transplantation.
Andrea Merkord: The biggest lesson from the experience is just to take one day at a time. Take each experience as it comes, take a deep breath when it happens, stop and look at the bigger picture.
Dr. Michael Harrison: Think of it from the family's point of view. Think how much devotion it takes to come from Bend, Oregon, all the way to San Francisco, go through these procedures and pain and the inconvenience and the anxiety and then to come back and do it again. It's quite astounding, takes a special family to do that.
Andrea Merkord: When I think about things I used to worry about, it's not that big of a deal. We get irritated at life, we get frustrated at day-to-day circumstances, but it has changed my perspective on everything.
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