Preliminary discussion with the Neonatologist

While I think it may have been a bit premature to have a meeting with the Neonatologist, the Perinatologist advised I have a discussion to get an idea of what risk/benefit there may be for delivering the twins from 24 weeks on out. Yes, 24 weeks is insanely early and the specialist agreed with my decision to hold out until 28 weeks at the bare minimum. Of course who knows what the actual decision would be if baby B shows signs of going downhill quickly before 28 weeks, but the odds of survival before a 28 week delivery are 50%, not to mention the risks of blindness, deafness, mental disabilities, brain aneurysms--the list goes on and on--are incredibly likely before 28 weeks. Not to say there aren't babies out there who have been born before 28 weeks that made it out perfectly fine after months in the NICU. But realistically, twins are already prone to be born underweight, so it would not be an optimal condition to start from. And looking at the current statistics of baby A's likelihood of having adverse effects if baby B doesn't make it in utero, it's a 20% chance she would be impacted. Giving birth to her before 28 weeks gives her a 50% that she would be impacted. I'm not great at math, but there is finally a statistic thrown my way that I don't have to flip a coin for.

But really, the conversation wasn't about baby A with the Neonatologist. It was about baby B and how her current condition in utero may play out outside of the womb. Bottom line is that it's not good. Feel free to skip the rest of this post if you don't want to read the nitty gritty. You've been warned.

The conversation started out fairly straightforward. The hospital I am scheduled to deliver at has a level 3 NICU (neonatal intensive care unit) with doctors that work at this hospital and at the Children's hospital as a cohesive team. If surgery is required, the hospitals would coordinate to transfer baby B to Children's hospital once she's stabilized. Children's hospital is not set up for deliveries, and my hospital is not set up for that type of surgery. A team would be present in the delivery room (in my case the operating room where I will have a c-section) that would be able to intubate and put an umbilical line in baby B in case her heart does need surgery. As for baby A, depending on the amount of prematurity, both hospitals are equipped to handle her. She could also be transferred to Children's once I am released from the hospital, so we wouldn't have to make two separate trips. Straightforward.
Then I started asking the tough questions:

Has this Neonatologist ever cared for a baby with this size cystic hygroma?
Yes, he has seen this and most often the cystic hygroma outside of the womb of this size will have some impact to the airway and they may not be able to intubate. She may not be able to breathe on her own and they may not be able to do anything about it. They would suggest that everything done to make her comfortable and let us spend as much time with her as possible until she passed.

Has the Neonatologist cared for a baby with the level of fluid inside her body and also with the amount of skin edema she has collected?
Yes, he's seen this as well though not in addition to a cystic hygroma. Typically the hydrops causes problems once the baby is born because it is at this time that the lungs, heart, and other organs really need to work. If the fluid is pressing on these organs, they will not function properly and may have not really developed properly at all given the fluid in utero. While in utero, the baby relies on the placenta to do the heavy lifting. Outside of the womb, she's on her own. Draining the fluid will only help at that point of time, but the underlying reason for why the fluid is there will continue, as will the fluid typically build back up.

Has this Neonatologist cared for a baby with coarctation of the heart?
Yes, they typically stabilize the baby and transfer the baby to Children's for a fairly routine procedure that involves minimal risks. It would not be open heart surgery. They would go in through the side with a bra line incision to repair the coarctation. However, baby B may also have left ventricle narrowing, which would be an invasive surgery and may require future surgeries. I will have another echo on baby B's heart in the next few weeks to see if the cardiologist can pinpoint what really is needed. Even with two echos in Cincinnati, the images weren't great enough to be able to determine the exact issues she has. However, they would need to have her stabilized, and the cystic hygroma and hydrops add a lot of uncertainty that would happen at all. Not to mention what type of surgery is necessary and they may recommend making her as comfortable as possible and do nothing.

Has this Neonatologist ever seen a baby with Turner's Syndrome present all of these factors and survived? No. Not only has he not seen a baby with this much going on, he's never seen a baby with half this much fair well. But here's the thing. California is very liberal with abortion and most often when told that their baby has these issues, they decide to terminate the pregnancy. And never has there been a situation where there is one baby who has all these issues, and a co-twin who has no issues. Most often the specialist are dealing with a singleton pregnancy.

The Neonatologist admitted that my situation is like nothing he's seen and that he is going to put some calls out to other colleagues to discuss further. He told me that any decision we decide to make during this process and after the babies are born, are completely supported. Because quite honestly, no one knows what may happen and no one knows what the best decision will be. It may also be discussed to have me deliver the babies at Stanford, where they have the advantage of a delivery and level 4 NICU at the same place. This is something we'll discuss further out.

So here's the human side of things. The Neonatologist asked how I'm even capable of having this bare bones discussion and keeping it all together. He said he's never had a discussion with a parent that seemed more like talking to a colleague. I'd been asked this in Cincinnati. I get that it's hard for people to imagine having to have these discussions. I also know that if I broke down and cried or sat there in silence, I would not get half the information I need to make an informed decision. If I don't do my own research of medical journals or message boards with humans telling their stories, I wouldn't have those questions to ask. I know I'm in uncharted territory here, and I owe it to these babies to keep it together for their sake. I have my moments, definitely. But we've made the decision to see this through and there's no going back. From here on out I have to stay informed and listen to all the grim stuff, while keeping hope that maybe, just maybe baby B will prove everyone wrong. Maybe a miracle is out there waiting for us. It's up to her, baby B, how this plays out. And she's been quite strong. Or maybe baby A has something to do with baby B's strength. They are connected to the placenta and vascular structure. Who's to say they aren't fighting as a team to keep it all together? The doctors surely don't know at this point, so until we have any indication that things aren't going to turn out, we need to keep strong and hope for the best possible outcome.