2024 Fetal Care Center Frontiers in Fetal Neurology Day 1 - Hour 2 Q&A

And thanks to everybody who spoke this afternoon, um, both the first hour and the 2nd hour. We again have about 5 to 10 minutes for questions, and I'll start with a question from Doctor Lim to Doctor Gano. Uh, Doctor Lim asks, for twin to twin patients, what is the incidence of intracranial hemorrhage in those that had pedoscopic laser surgery versus those without? In addition, what are the neurologic outcomes of those with and without pedoscopic laser surgery? Thanks so much for that set of questions. Obviously, a, a complicated issue, and I want to point out where some of the limitations of the literature make specifically answering that question challenging. We don't have great imaging comparisons of treated and untreated groups, and most of the imaging studies reported in twin twin transfusion are ultrasound-based reporting in a meta-analysis, you know, 2% rate of intracranial abnormalities, whether acquired. Acute injury, remote injury, or malformation secondary to remote injury. But we see higher rates of brain injury by MRI both in fetal MRI studies, as well as studies of neonatal neuroimaging following a complicated twin pregnancy. Um, if you look at the rates of brain injury after amnio reduction, they're anywhere from 6 to 38%, uh, whereas, uh, after laser surgery, the estimated range by MRI is about 8 to 18%. And if you look at neurodevelopment, cerebral palsy being an early motor impairment that tends to be a common outcome in many studies of early childhood neurodevelopment. Uh, the rates of CP after laser surgery vary from about 3 to 12% and any neurodevelopmental impairment up to about 20%. So, another way to look at the available data is that after treatment with a fetal laser surgery, about 2/3 have survival with no early neurodevelopmental impairment, but I think this is an area we do need, uh, a lot more research on for accurate prognostication. And along that line, If I may 1 point I want to add are the layers of complexity and uncertainty that go into the counseling at the time of prenatal consultation, where we know there's ongoing risk for brain injury even after a laser surgery, because there could be reastomosis or co-twin demise. And then there's the element of uncertainty around the actual age the patient will deliver, and we know there's that inverse relationship between risk of brain injury and gestational age at birth, and we don't know any of these things that might happen at the time of fetal counseling. So, I think we have to incorporate these layers and continue the individual follow-up to risk stratify what outcome might look like in each individual case. Thank you. Uh, and I, I can ask a question next. Um, it's for Doctor Agarwal. When you were discussing the patient with, um, the, that the family opted for comfort care and was receiving IV infusions, there was a, a treatment called Charlotte's Web mentioned. Yeah, um, it's one, it's like the cannabis oils that, uh, families buy over the counter. As neurologists, we don't recommend, but when. Uh, they want to go that route, um, for this child. I mean, they had thought the child will not survive, and their wishes were to go home with the child and have as much time as possible. But now we are 2.5 years later and they're trying to do palliative management. There's hospice involved. We have some Ativan and other things for home support, but he's very profoundly low tone and needs a lot of feeding and breathing support, and, um, yeah, so it's more a palliative approach to do just anything to keep seizures at bay. And I think that really highlights kind of bridging both you and Doctor Cortezo when we counsel these patients with severe abnormalities, whether it's genetic or structural. We tend, you know, there's a tendency to focus on the risk of death, but we also have to really prepare themselves for the chance of survival and what that looks like, um, both short term and long-term. Absolutely. And, and this is not the only patient where, uh, you know, parents, when they see the child, The decision making just evolves and we cannot go by what we have spoken to them at 24 weeks or 36 weeks, even at the time of birth, and, and they really once they see the child, how they are doing in the next few days or weeks, um, we have to regroup and do those discussions, these hard conversations again and again. A commentary and, and a, and a question. Um, I think a challenging aspect um of being a, uh, the child neurologist who's tasked with this is we don't have a relationship as we meet these families, and we're, and we're trying to get to know them and also con convey all this information to them. And, and, and the most rewarding part is really when we're able to follow them on that. journey. When we follow them through their neonatal period, their postnatal period, and we see them grow, and then really through sometimes adulthood, it's, it's incredibly rewarding. Um, but it, but it's challenging because for many of the families and some centers, that's not always possible. So it's, it's quite kind of fragmented. To care. Um, and in studies have shown that while many families have been, um, very pleased with their fetal experience, um, they struggle, um, once they entered, perhaps, you know, that, that neonatal and they're in the NICU and, and beyond, that is, that they, they feel like they've lost that support system. So I think it is a very challenging um area that we need to work on, on improving. So a very, um, you know, just a, a question, um, to Doctor Cortezo. Um, the idea of that birth plan is, is really wonderful. Um, how are Ways that you find just practically implementing that can, can be challenging, especially when um the counseling is in one center, um, they're born perhaps elsewhere. What are some ways, practical ways that you have found have worked well? Sure, and I think you're right. Every system is different as far as do they have a palliative care team? Is it one delivery hospital versus a system regional approach to care? It takes the benefit if there is a palliative care team, they're walking through that journey with the family. Whether that's at the obstetric appointment, sometimes the fetal care appointments, meeting with neurology, speaking with the OBs, things that I find is helpful are writing a note in the electronic medical record. I say the parents have their social birth plan that they will keep with them and then we'll distribute to um the physicians, but then my note has all of the details of the medical care that aligns with that plan. Um, it's challenging, unfortunately, even with the same Epic system, they don't all talk with each other, so that relies on the provider having to route the note to the obstetrician. I often find at each hospital who the charge labor and delivery nurse is and we'll make sure they have a copy of. Birth plan, make sure the MFM, the obstetrician, all the sub-specialists that I envision being involved in the care. So, it is by no means foolproof and it's quite labor intensive to make sure that continuity of care exists. And I think at the end of the day, in addition to the records, it comes down to communication and conversations. Well, that's all the time we have for today. Um, this was a fantastic discussion, really interesting, very You know, impactful. Um, and I wanna thank all of the presenters, and I also wanna thank everyone who joined us today, and we look forward to see you, seeing you again next week when we continue the discussion. Thank you for having us. Thank you.