Stephanie Ernst is an Australian who lives in the Netherlands. Her husband is Dutch, and they moved to Australia around ten years ago because his job was there. Then, she was pregnant with identical twins. It was quite a challenge for them as they were in a country where she did not understand the language. At 24 weeks, the twins were diagnosed with twin anemia polycythemia sequence (TAPS).
She believes that “it’s really important that doctors and patients communicate: telling future doctors what patients really want to know.” One of her biggest passion in life “is making sure that patients are breaking the barriers of medical jargon and having patients and doctors come together and work out plans and actions as a team.” “Not only for future doctors, it's for current doctors to talk about their experience, to learn about patient experiences.”
Can you tell me about your medical journey?
“Twin anemia polycythemia sequence, in a nutshell, is all based on the placenta of the twins because my twins were sharing a placenta, and the problem is that one twin was sending all her red blood cells to her sister, but she was not getting anything in exchange. And so she was becoming very anemic. My sister was becoming polysemic. Or you can think of it that one twin had blood that was like Koolaid or lemonade or rosy wine, and the other twin's blood was like molasses or ketchup. It was so thick. And this causes a lot of problems.
“And so my journey started at 24 weeks, and we were monitored very closely and all the time it was just watch and wait and see what happens. And then at 31 weeks, they actually found that they found a marker on one of my twin’s brains that they thought she may have had a stroke or a brain bleeding uterus. So they decided to take them both out and see what they could do. So with TAPS, of course, you have to treat two very sick babies at birth. One is one has way too much blood, and the other one has not had enough. [...] But then also at the time, we weren't sure of what the long-term effects of it were. And so we've lived with a lot of uncertainty. And it really wasn't until about two years ago that we finally got some answers on what kind of long-term effects we would be looking at. So it doesn't just happen. TAPS doesn't just stop after birth. It continues going, even though the root of the problem is fixed, the continuing diagnosis is there. And so it's not only been advocating for them before birth because I was actually fortunate in that my hospital was looking for it, found it, treated it to the best of their ability at the time, but after they've been born, it's more of a challenge to have it, first of all, recognized medically that it is a problem and that it's not another similar disease, but also to have long-term testing done and things followed up on the girls. It's been intensive. There's been a lot of tears, a lot of arguments, a lot of fights to get second and even third opinions. But it's been a learning curve, and it's not one that I ever planned on having. But it's been interesting.”
The fact that there is a lack of research about the disease has been most nervous and disappointing during diagnosis and treatment for Stephanie.
“The fact that there was nothing known about this disease other than they knew how to look for it, but they didn't know what the best treatment is, and they still actually don't know what the best treatment is. However, now there is a clinical trial going that is establishing the best treatment and also what the effect in the future would be on my children. Would they be completely normal? Would they have problems? And this is something we had to live with, not knowing initially. And now we know more, it's somewhat empowering because we know what to ask for, but we still have many questions and that we still don't have answers for.”
Fortunately, having a wonderful medical team and a long-term relationship has helped her feel relieved and calm during the process. Their understanding, reassurance, and explanations are really meaningful to her.
“I have to say, the incredible medical team that was around me. Because, I guess, like I said, I was very fortunate, and in this case, really fortunate because of the team that's treated me and diagnosed me, where the team that discovered this disease, and they have since set most of the benchmarks in treatment and diagnosis. But on a personal level, they were always invested in what I had to say. It took time to explain things.”
“A few weeks ago, we had something called The Twin Run, which was a big fundraiser for our foundation. But I got to reconnect with one of the doctors that I first had, and I went up to him, and I said to him, [...] ‘You don't remember me?’ And he goes, ‘Oh, I know who you are.’ And I said, ‘No, but you don't remember me.’ ‘My second appointment at the hospital was with you, and you talked me out of my tree. You explained everything beautifully. You helped me understand what was going on. And I am so grateful to you for that.’ And he was like, ‘I didn't want to cry today, but that means so much to me.’ And I said, ‘Well, we can both cry together because I've been saving that for eight years.’ But that was honestly the relationship that I had with the doctors and with the team at the hospital that treated us. And we still have that relationship. But it's not only me who has that relationship with them, it's everyone who goes through that center has the same level of respect, of understanding even though they're terrified they still will give you a hug. They will reassure you. They explain things. And that's really what was the best part. And that's what kept me calm.”
After she received her diagnosis, there was a significant change in her life. She learned to “let it go”.
“Well, first of all, I am a reformed control freak. I used to everything was planned. When we found out we were having twins, I had timelines established of when we would have the nursery done. And when we would have shopping lists and everything. And we got this diagnosis. And all of a sudden, my realization was, I can't control everything in my life. And I think that's been the biggest thing I learned is that sometimes I call them Elsa moments. You have to let it go. My husband and I actually have a joke. It's like, okay, you need to do your Elsa thing. You need to let it go because we have twins, have autism, and a couple of other random diagnoses. They're wonderful happy little girls don't get me wrong. And they attend normal school. They're very happy. But we have moments where we're like, you know what we have to work out? Are we fighting the child or the autism? And do we just have to let this go? Because I have lessons. Let it go.”
In her opinion, these are the qualities a good doctor possesses.
“I can give you the names. I have known several doctors that I work with as a foundation, and they're also ones from my personal journey. But they're kind; they listen; they take notice, and they check in on a patient. I actually wrote an article about this once upon a time, but I think what a good doctor does is they give the information, but then they know that patients are processing that information, and then they take it away. Sometimes they have more questions after the appointment, and they may feel silly or they may feel intimidated or just overwhelmed with the diagnosis. And I think what is a really good thing a doctor will do is check in with that patient after a day or so. Do you have more questions for me? Is there anything I can explain for you? How are you coping?
“Good doctors also will give you all the available options. Patients will always walk away with the worst possible option in their heads. However, they will come back with more questions, and they will make sure that they explain those options. And not only that they are compassionate, and they break things down because there is a lot of medical jargon and you can use big words. And patients, some patients are just going to go straight over their head. They're not going to understand it. And the doctor will say, okay, I'm talking really quickly right now. Do I need to go back on something, is something I don't understand.
Doctors have time constraints and we all know this. But a good doctor will always make sure that there is an opportunity to explain. And I think also a good doctor builds a relationship with their patients, and it's not a friendship level. It's not like they have to be best friends, but it's more along the lines of building a compassionate relationship where there is a lot of trust and they're breaking down barriers. There's no white coat syndrome in the middle. Everyone is an equal in the room. And I think that's really important, because as patients, we have control, we are trusting doctors with the most important thing that we have and that's our bodies and our health and our mental health. We're giving you everything on a palte, and we trust you to take care of that. But if we can't trust you, then it's really kind of a case of, well, how do we work together as a team?
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