The onset of a strange itchiness results in the discovery that pregnant Emily Rusch is experiencing cholestasis. Emily shares about her experience as a bereaved and newly sensitized mother as she navigates alloimmunization in her subsequent pregnancies.
The onset of a strange itchiness results in the discovery that pregnant Emily Rusch is experiencing cholestasis. A lack of adequate medical attention results in the death of Emily’s baby in the NICU. Emily shares about her experience as a bereaved and newly sensitized mother as she navigates alloimmunization in her subsequent pregnancies.
Show Themes:
References:
Research for this episode provided by Bethany Weathersby and Molly Sherwood of the Allo Hope Foundation. Find more information at https://allohopefoundation.org
The Allo Podcast is produced and edited by Media Club.
Molly Sherwood:
The information shared on The Allo Podcast is not intended as medical advice. Your medical care decisions should be made in consultation with your physician, who is familiar with your specific case.
Bethany Weathersby:
Hi. Welcome to The Allo Podcast by the Allo Hope Foundation. I'm Bethany Weathersby.
Molly Sherwood:
And I'm Molly Sherwood. That intro sounded great. So warm.
Bethany Weathersby:
Thank you.
Molly Sherwood:
Just great tone. Love it.
Bethany Weathersby:
Thank you. I am sitting on a heating pad.
Molly Sherwood:
Oh, that's lovely.
Bethany Weathersby:
It's so warm.
Molly Sherwood:
It's just radiating. It's radiating into your voice. I feel the warmth. It's lovely.
Bethany Weathersby:
That's great. Well, I am so excited to have my friend and fellow alloimmunized mom on the podcast today, Emily Rusch. Emily has been an inspiration and encouragement to me over the past few years as we grow our families and learn how to navigate the loss of our daughters.
Emily and I are doing this podcast in person. I'm super excited to see Emily in my living room right now and be able to hear her story. I think all of our listeners are going to love it.
Molly Sherwood:
I'm hearing this really for the first time, just as a listener too. I will bring that perspective and-
Bethany Weathersby:
Yes, that's perfect.
Molly Sherwood:
... I will interrupt you guys if you say something that's confusing to just a lay listener such as myself.
Bethany Weathersby:
Oh, that's great. Emily, welcome to the Olive Garden. Welcome to the Olive Garden.
Molly Sherwood:
Free breadsticks after this.
Bethany Weathersby:
Exactly, exactly. Welcome to The Allo Podcast, Emily.
Emily Rusch:
Thank you. I'm so excited and honored to be here. This is the first time I've been at your house ever too, so I get to see the inner workings of your life. And it's-
Bethany Weathersby:
Enter chaos.
Emily Rusch:
Well, a little bit, but not necessarily much more than my house.
Bethany Weathersby:
True.
Emily Rusch:
It's always awesome to be able to dive deep without being interrupted as many times as when you just try and communicate virtually.
Bethany Weathersby:
That's true. Yeah. Emily got to come to my son's baseball game last night, because I really thought that they would have lost in the championship by now. We did not expect a baseball game when Emily was here, but it was like, he keeps winning, so it just keeps on.
Emily Rusch:
Gosh, darn.
Molly Sherwood:
Hate when you do that.
Bethany Weathersby:
I told her, I was like, "This is his last game, so we need to go." And guess what? They won again.
Molly Sherwood:
Oh my gosh.
Bethany Weathersby:
Which is great, but also like, this is messing up our schedule. Anyway.
Emily Rusch:
Classic mom of five children.
Bethany Weathersby:
I'm like, "You guys didn't really win the whole season and now you're going to win every single game in the championship." I mean, it keeps it exciting, that's for sure.
Emily Rusch:
Underdogs.
Bethany Weathersby:
Yes. Very exciting. By the way, Emily and I, I don't think we planned this at all, but somehow we perfectly alternate our pregnancies so that she has a baby, then I have a baby, then she has a baby, then I have a baby.
Emily Rusch:
It's your turn.
Bethany Weathersby:
No, no. It is time to officially break the pattern. No.
Emily Rusch:
Yeah. Well-
Bethany Weathersby:
Because she did have the last baby, and there are no more babies coming out of me.
Emily Rusch:
I need someone else to alternate with then.
Molly Sherwood:
Shop is closed.
Emily Rusch:
Molly?
Bethany Weathersby:
Okay, Molly. I'll pass the baton to Molly.
Molly Sherwood:
No, thank you.
Bethany Weathersby:
But just a few months ago, I was actually visiting Emily. We had all of our kids together at her house, and we realized if our oldest daughters were alive, we would've had a nine-year-old, an eight-year-old, seven-year-old, six-year-old, five-year old, three, two, and one year olds. So yeah, really stair steps there.
Molly Sherwood:
Wow. It sounds like you guys have a really sweet bond. It's so amazing that it's the antibodies, I assume, that brought you together in the first place.
Emily Rusch:
Yeah. I found Bethany when I found out that I had antibodies just from Googling, trying to understand better. It was originally her blog about Lucy that connected us, and I remember being such a fan girl-
Molly Sherwood:
Same, same.
Emily Rusch:
... thinking if I message this girl privately, will she even talk to me?
Molly Sherwood:
Yes, I totally did that too.
Emily Rusch:
Now the fact that we're friends, I'm like, I don't know, I think there's something about loss that make friendships more accessible when they start out virtually, because I've made several friends virtually through the losses, and I would've never done that with finding someone else that I might've needed in my community. You put in the effort. You put in the effort when you've got a trauma or a tragedy, I think.
I think another aspect is that, I mean, we'll dig into it in a minute, but our daughter's losses were both preventable also. I mean, among the lost community and among the Allo community, to find that connection to is even more rare. We continued to have kids after, and we're trying to help the world to not have that happen again.
Molly Sherwood:
That's what I was going to say. You're both strong advocates, which is also just an even smaller subset, certainly of the population you're talking about, just having a loud voice about this.
Bethany Weathersby:
Yes. And one more thing we have in common, which is I think very rare, is that we both wanted large families and have pursued that despite the antibodies and losing a child.
Molly Sherwood:
Okay. This is such a tease. I need to hear this whole story.
Emily Rusch:
Okay, let's talk about this.
Bethany Weathersby:
Let's dive in. Yes, before you start with your first pregnancy. Did you always want a large family? Did you always want lots of kids?
Emily Rusch:
I have two younger sisters, and no one in my family ever had more than three kids, so that wasn't a lifestyle that I grew up in. But I remember in high school just really it being on my heart that I wanted six kids, and that just never went away. I also wanted to get married young and have children young because I wanted to be an active participant of my children's lives as I got older. I feel like I had less of that than I wanted in my life, and so I wanted to be physically able to enjoy grandchildren and maybe even great-grandchildren.
Not everyone has control over that. I feel very blessed that I at least was able to get married to someone I still like. We've been married about 10 years. We got married young, and I was able to get pregnant pretty young. Still working on the six kids part, but there's still time for that.
Bethany Weathersby:
Nice. I love that you had an actual number in your mind, kind of like I did. I had five, just like the ideal to me, not to most people I know. Okay. Start with your first pregnancy, Emily. Tell us about that.
Emily Rusch:
We were young and poor, and we decided after about a year of marriage, we were going to try for a baby, and we got pregnant instantly. The pregnancy by and large was super smooth.
We were getting close to the due date. I was about 37 and four weeks pregnant when I started feeling itchy. I gave it maybe half a day or something before I said anything. I figured maybe I had eaten something. I don't have any allergies really, not many at least. And so I was trying to give it time to maybe pass and it just wasn't passing.
I slept through the night with it and I could not get comfortable in my bed. Every time the sheet would touch my leg or something just slightly, I just couldn't get comfortable. And my loofah in the shower felt amazing. I just scratched and scratched all over.
I finally posted on social media on my Facebook page and said, "I'm itchy all over. It's not just my belly, it's my hands, the back of my knees, my face, places that weren't stretching" because I assumed people were going to give me feedback on that. And most people still said, "Oh, it's pregnancy" blah, blah, blah. But one friend said, "This could be a really serious liver problem. Call your doctor today."
So I called. I got an appointment. The person who booked my appointment actually didn't even relay that I had been itchy. She had noted that I was swollen because I do retain a lot of water and they'd asked me that on the phone, but I had to tell her in person why I was even there.
Bethany Weathersby:
Oh, wow.
Emily Rusch:
She said, "Well, it's probably PUPPP, another itchy condition that comes with a rash." I had no rash, but she still wanted to assume that that's what it was. And so I asked a few times. I was like, "Can we do some blood work? Can we confirm this?" And so she agreed.
I headed over to the lab right after my appointment, and I happened to ask the tech how long for the results, and she said it takes a few days.
Molly Sherwood:
What?
Emily Rusch:
So I wasn't going to have them that afternoon. And one of the labs I was supposed to be fasting for, and I had not thought to fast prior to going in, so I had to go back the next day, which was a Friday. I went first thing in the morning.
Molly Sherwood:
Oh my gosh.
Emily Rusch:
I had that lab drawn. Going into the weekend, I knew it was just going to be a struggle to get that lab work back. But the two labs I had drawn on Thursday, I got those results that night, and one of them was elevated. It was my ALT and AST. One of them was about 10 points higher than it should have been.
And so I called the on-call people and they said, "Well, this isn't really enough information to diagnose you with this condition. Let's wait until the next results come in." So Monday morning, I saw in an email that my lab work was in and I was able to see it, which was awesome because a lot of times you have to wait for the doctors to tell you what your labs are. I wish I had that much control over all my lab work these days. But the value for the bile acids that they had tested to diagnose cholestasis of pregnancy, the value was supposed to be zero to 19, and mine was 141.
Molly Sherwood:
Wow.
Bethany Weathersby:
Oh my goodness, Emily. Can I ask you really quick a question about the timeline? You started itching on the Wednesday?
Emily Rusch:
Wednesday.
Bethany Weathersby:
Wow. That was the first time you started itching?
Emily Rusch:
Mm-hmm.
Bethany Weathersby:
By that night-
Molly Sherwood:
And then no diagnosis till Monday?
Bethany Weathersby:
Well, but that seems so fast to get that itchy that quick to the point where that same night it was bothering you in your sleep.
Emily Rusch:
Yes, yes.
Bethany Weathersby:
And then the next day was the first blood work, and then Friday was the second blood work, right?
Emily Rusch:
Mm-hmm. Right.
Bethany Weathersby:
Okay.
Emily Rusch:
Monday morning I had an insurance company or a doctor's office that you couldn't really call your OB directly. It was really frustrating. Not just your OB, but your office, you couldn't call the OB's office.
Bethany Weathersby:
Oh, wow.
Emily Rusch:
I had to go through the main line, then be diverted to the OB. And then it was just a mess. And so I was on hold for approximately four hours.
Bethany Weathersby:
No, Emily.
Emily Rusch:
Yes.
Molly Sherwood:
Oh my gosh.
Bethany Weathersby:
After that result came in.
Emily Rusch:
Because it was Monday morning. Yeah, after I saw the result, I received no phone call, no email, nothing from the office. I was trying to call and see what I needed to do. I think I failed to mention, so the day I got itchy, I was 37 weeks and four days pregnant, so really close.
I finally got ahold of somebody after four hours, and they wanted me to come in and do an NST, check the baby's heart rate, and then do an ultrasound.
Molly Sherwood:
An NST is a non-stress test to just check on baby's breathing and kicks and heart rate. Yeah.
Emily Rusch:
She passed that. Her name we had decided earlier was Addison. She passed that. We did the ultrasound. The OB called the high-risk doctor, and he said, "Let's just go ahead and induce." I was excited. I was nervous. It didn't really occur to me that I would deliver early. Most first-time pregnancies from what I had heard would go to term or beyond term. I had not had many practice, false labor, no Braxton Hicks really, so I wasn't anticipating a delivery that week.
They said, "Don't go to the hospital right now. Just go home, get ready, come this evening around eight o'clock after shift change and we'll get you set up." We did that and they put me on Cervidil, which since I was so closed and not dilated at all, that was to help me dilate prior to starting Pitocin. This is just sort of like a tampon type thing.
And then the morning after that, they were going to start Pitocin, but they told me before they started Pitocin, why don't I go ahead and have breakfast, take a shower? And so when I got back from the shower, the nurse came to put the monitors back on my belly and she hit an all call button. She was having trouble finding the heartbeat.
I didn't really know what was happening. They were laying me back. They put oxygen on, and they were attempting to place a probe on Addison's head through my not really dilated cervix. That was horrific.
Bethany Weathersby:
Oh my goodness.
Emily Rusch:
That was probably up until my life, the worst pain I'd ever experienced.
Bethany Weathersby:
Wow. That's terrible.
Emily Rusch:
They attempted that three times.
Molly Sherwood:
Wow.
Emily Rusch:
They brought in a portable ultrasound machine to confirm. They did find a heartbeat, but it was super low. And so they raced me to the OR like you would see on Grey's Anatomy type thing, running down the hall. My husband got left in the labor delivery room.
In the OR, I had not had any sort of epidural or anything, so they shoved a catheter in. They shoved a whole bunch of IVs in my arms. They strapped my arms down. They scrubbed my belly. It felt very out of control. I remember someone, one of the nurses I assume, looking at me upside down to my view, saying, "Ms. Rusch, I need you to do your very best to calm down." And so I tried to stop hyperventilating, and then I was out.
Addison was born, I think within three minutes of when the C-section started. And Molly, I was listening to your episode in preparation for my episode, and I heard you say that I think it was like 28 minutes for your C-section minutes.
Molly Sherwood:
24 minutes, yeah.
Emily Rusch:
The reality, three minutes versus 24 minutes, all the precautions you would take to be careful in that procedure didn't matter. I'm glad they got her out so fast, but it's eye-opening. It took five to six minutes to resuscitate Addison. She did not have a heartbeat when she was born.
Once they got her back, they took her straight to NICU. My husband Nathan was able to follow her there and watch as they hooked her up to all the lifesaving devices that they had available. Fortunately, we were at a level three NICU so they could do almost anything necessary except surgery at that hospital.
When I started to wake up, he came back to me. When I asked about her, they were telling me that she was in critical condition. I didn't understand what that meant through the fog of an anesthesia. Also, I had never lost someone close to me in my entire life. My grandmother died when I was like six, but she lived far away and so it wasn't a close relationship.
I had never heard of someone losing a baby. All my ideas of someone going to NICU meant that they were going to come out of the NICU. It took me a couple of days before the sedation wore off, and one of the doctors came and told us... Well, the doctor came and brought Addison's nurse, and I could see it all over her face before he even started speaking. He said, "Your daughter is very, very, very, very, very, very sick, and you're going to have to think about what the humane thing to do is."
Molly Sherwood:
Oh my gosh.
Emily Rusch:
Which humane, you think of animals.
Molly Sherwood:
Yeah.
Emily Rusch:
Even though it's from the word human.
Bethany Weathersby:
Wow. So before that, you didn't know.
Emily Rusch:
I had no idea what they meant by her being critical.
Bethany Weathersby:
But that's all you knew? They didn't give more updates?
Emily Rusch:
They probably attempted to.
Bethany Weathersby:
Okay.
Emily Rusch:
I was just delirious. I needed two blood transfusions myself after her birth as well. My husband had insisted that they bring my hospital bed to her bedside prior to me going to the recovery mother area, like the mother baby unit, because he was afraid I would never meet her alive.
Bethany Weathersby:
Oh my goodness, Emily. Do you remember that?
Emily Rusch:
I do. I could not see her because of the way I was positioned in my bed. We were both laying down and I had no ab muscles anymore. They said not to touch her or rub her because it could stimulate her, and she was having clonic seizures at the time, and so I could just put my hand on her. I just put like three fingers on her knee, and that was all.
Bethany Weathersby:
Good for Nathan for thinking of that. Even though it was just three fingers on her knee, that's still so important.
Emily Rusch:
Yeah, it was. They told me they had put a cool cap on her brain or on her head to preserve any brain function. The first EEG to measure her brain function showed that there was no activity, but the cool cap would fully have its opportunity to have a full effect within 72 hours. And so they were going to wait. She was born on a Tuesday, so they were going to wait until Friday to see how she was doing.
We just tried to have hope until Friday. But when they took that off, we just had a feeling the whole time that she was not going to receive the miracle that we were praying for. She was on all the support, all the oxygen, all the medicine that they could give her, and it was not enough. She was still declining. The EEG showed that there was no brain activity. We actually watched as they did that.
Bethany Weathersby:
Oh my goodness.
Emily Rusch:
I remember turning to Nathan and saying, "I don't know how to read an EEG, but that looks like a pretty flat line to me."
Bethany Weathersby:
Terrible.
Emily Rusch:
We took her off life support at three days old.
Bethany Weathersby:
That's so hard, Emily.
Emily Rusch:
I decided I wanted to be able to bathe her and bless her prior to her being taken off life support because I didn't know how long she would last. And so they turned off her beeping monitors and everything so that we didn't have to worry if we were making it worse for her or not. We bathed her and we dressed her and blessed her.
They handed her to me for the first time. At one point I handed her to Nathan, and then he handed her back to me. The doctor came by to check her heart rate, and I was so scared, and she actually still had a little bit of a heartbeat. It felt like such a gift to have a few more minutes. But the second time that he came, there was no heartbeat.
She lived about 15 minutes in my arms. They didn't let any of the other NICU parents in the room, which was good for them and for us, because I'd never heard someone cry the way that I heard myself cry that day.
Bethany Weathersby:
Oh, that's so hard, Emily. I think that's really special that she got to know her daddy holding her, the feeling of her daddy holding her and her mommy holding her before she passed.
Emily Rusch:
Yeah. Yeah. I got to sing to her as she died too, which are songs I could never sing again, practically. It was like, my kids know those songs now but not because I taught them to them. I sang This Little Light of Mine, Twinkle Twinkle Little Star, and I Am a Child of God, and just one verse of all of those. It was not long after I had sung the third song that they checked her heart rate. She died during those songs, I'm sure at some point.
One thing that was also a little bit scary about that is I didn't know that she would... When they handed her to me, there was a little bit of blood and mucus that came out of her nose because she had been intubated, and I was so terrified of her sitting up and having more drainage that I was not emotionally prepared to see, the pain that she was enduring in that physical way. And so I never sat her up. If I ever held her, she was always flat. I wish I didn't have that fear because that's such a tender feeling to be heart-to-heart with your child.
Bethany Weathersby:
I'm so sorry, Emily. It's not the same, but I remember being so scared to hold Lucy after she died. I just wish that I could go back and hold her.
Emily Rusch:
We decided not to bring her to our hospital room because eventually we had to leave the NICU. There was this little parents' room down the hallway inside the NICU still, and so we were able to take her over there and prepare her funeral and things. We made a post online saying what had happened.
I remember Nathan went to pass her to me after she'd been gone for a little while, and he said, "I just want you to know she's cold." I was appreciative of his warning. She was starting to get stiff. That was something I really wanted to know but I didn't know how to phrase was how quickly her body would deteriorate.
We stayed in that room till 1:00 AM and then we handed her back and didn't see her again until the funeral because I was so afraid of that blood and mucus that had come down, I didn't want anything else to happen that she wasn't as perfect as I wanted to remember her.
Bethany Weathersby:
I would love to know how much Addison weighed. What did she look like? I know because I've seen the photos, she is beautiful, beautiful. But I want you to tell us all about Addison, and tell us her middle name too.
Emily Rusch:
It's Addison River Rusch. We got a dog about a month after that we named River. She weighed seven pounds, nine ounces. She was 19 inches long. She was the smallest of my babies. She had dark black hair, which Daddy and I also had when we were babies. And so that was somewhat expected. But she just had the most beautiful cheekbones.
I feel really lucky that we had such a beautiful infant because not many loss moms get to share pictures and not have an uncomfortable reaction from the people that they share them with, because those babies may not be term, or they may have had some deformities, they may have had poor coloring. But Addison truly just looks like she was sleeping in those photos. She was definitely the most beautiful of my four babies as an infant.
Molly Sherwood:
Aw.
Bethany Weathersby:
Tell it like it is.
Emily Rusch:
I mean, I love them.
Molly Sherwood:
Not all infants are cute, honestly. The newborns are not always cutest.
Emily Rusch:
Yeah. Poor Adelaide has such bad baby acne and all that, but-
Molly Sherwood:
It sounds like Nathan really knew weirdly how to comfort you, even though-
Bethany Weathersby:
He did.
Molly Sherwood:
... you were young in your marriage and not necessarily experienced with grief. You keep mentioning ways that he knew-
Bethany Weathersby:
Or parenthood.
Molly Sherwood:
... how to support you.
Emily Rusch:
Yeah. About 80% of parents who lose a child have a divorce afterwards at some point. It was actually the moment where he said, "Your daughter's very, very, very, very sick," after he left, we said, "Number one, we're going to choose to be honored to be her parents. Whether she receives the miracle and is fully healed, whether she lives and struggles, or whether she dies, we will be honored that we were chosen to be her parents. The other thing is, I am not losing a spouse after I also have to lose a child, so we are not losing each other after this."
Really, Nathan has been incredible. He and I did not grieve the same. I don't think any two people do. But at one point he told me, "I could never have loved her as much as you did. I didn't carry her," because I was almost mad at him for not grieving her as hard as I did. I grieved very publicly and very verbally.
It was so lonely. I felt lonely even though he was trying, but it was like nobody could match my pain. But it made me feel honored that he recognized there's a reason why no one could love her as much as I did.
Bethany Weathersby:
I love that he acknowledged that and was able to see that.
Once you got home from the hospital and there was no baby, how did you survive that?
Emily Rusch:
Well, I definitely couldn't go in her nursery. That took a long time. We planned a funeral, which was actually just six days after she was born.
Bethany Weathersby:
Wow.
Emily Rusch:
That was like three days after she died. I had never planned a funeral before. I didn't have people to advise me on what was normal or not normal. I definitely wanted a viewing because I made this beautiful person and people needed to know. And so we did the viewing and the funeral. I was really thankful. We ended up having over 300 people came.
Molly Sherwood:
Wow.
Emily Rusch:
There was a feeling like nobody knew her, so who would come? I don't know. I was really glad.
Bethany Weathersby:
Those are also beautiful pictures of you and Addison at the funeral and Nathan. It's really hard to kind of move on from that.
Molly Sherwood:
I know.
Bethany Weathersby:
But there is so much more, and Addison is weaved throughout your entire story.
Emily Rusch:
Yeah.
Bethany Weathersby:
I think she plays a huge part in the survival of your next babies to come. Let's talk about kind of leading up to that, how did you transition?
Emily Rusch:
We didn't really know what caused Addison's heart beat to slow down like it did. And so we ended up going to a preconception appointment with a high risk doctor. Up until that point, we had been told that the cholestasis I had was unrelated, and this doctor said, "I don't see how. It was absolutely related." I was floored. I couldn't believe, I felt lied to.
I actually ended up, it was Christmas Eve and I was up late researching cholestasis. I needed to know how likely it was that I was going to get it again, what the protocols were. I discovered that I felt like they were kind of lazy in how they had diagnosed me, and I wondered if that would've made a difference if they had done a better job.
And so I reached out to a patent lawyer that I knew through church and said, "Do you know any malpractice attorneys?" He referred me to a friend who was no longer working in that field but had. And so he sort of interviewed me about what had happened. He said, "I do think something went wrong here that was preventable."
And so he then referred me to the attorneys that we used, which were Webb and Taylor. They also agreed when they heard the story, that it sounded suspicious. And so we pursued that. What was discovered is that she had two fetal decelerations while I was asleep in the night around 6:40 and 7:00 AM. One of them for sure was about three minutes long.
Molly Sherwood:
Wow.
Bethany Weathersby:
Wow. That's so long.
Emily Rusch:
Yeah. I really recently found out that one minute, there better be a nurse in your room. Two minutes, you better be calling the doctor, sitting the mom up, doing all the things. Three minutes is absurd in the form of a response from the D cells. They did react to the D cells, but what we discovered is they didn't tell the doctors, they didn't tell the nurses, they didn't change my plan to take a shower.
Bethany Weathersby:
And take you off the monitor to shower.
Emily Rusch:
Right. I was off the monitor for about an hour and 15 minutes. Not that I was showering actively that entire time-
Bethany Weathersby:
Wow.
Emily Rusch:
... but that's how long it took me to get back on the monitors.
Bethany Weathersby:
Oh my goodness.
Emily Rusch:
That was really deplorable. And so we continued to pursue that case. I was glad we did. We ended up conceiving Cooper amidst pursuing that case, and then the case resolved when he was about six months old.
Molly Sherwood:
How long was that process?
Emily Rusch:
A little over two years.
Bethany Weathersby:
It's a very touchy subject, obviously medical malpractice, pursuing legal action, but it's super important I think just to at least touch on it for a minute here. What were your goals? What were you trying to accomplish in pursuing that? Because it sounds like it was a big commitment to pursue that for that long.
Emily Rusch:
Yeah. There was a lot of waiting, which was very emotionally exhausting. I wanted the answers. What I discovered at the end of it was that I never got to see or talk to or hear an apology from the people who could have made better decisions. I think if I could have had those, that's what I would've wanted most.
Bethany Weathersby:
Right, yes.
Emily Rusch:
However, on my best days, those people are only human and they made a mistake and they didn't do it on purpose. On my worst days, they should be in jail for the rest of their lives. Just how I feel sometimes changes. What day would it have been that I actually got to talk to them? What mood would I have been in? Would it really have made it better? Would they have even been able to say the right things? Maybe not.
And so even though I didn't get those things, I had to remove that expectation that that was ever going to happen, that I was going to get the apology I wanted or that she deserved. In the end of it, I wanted change, and I still don't have any confirmation of change. Nobody told me if they tried to do better, but I hope they did.
When I've talked to other people who work in different hospital systems and medical practices, there's apparently a lot of training that goes on when something like this happens because it's very expensive for them to go through this process. And so my hope is that education happened for people and empathy happened, and that I could know with a surety that it was preventable because not everyone gets to know that their child's loss was preventable. Because her loss was preventable, it meant that my future children had a chance.
Molly Sherwood:
You never would've known that first being in the hospital with her and after her delivery. It sounds like there was just no communication at that time.
Emily Rusch:
Right. And so even though we originally pursued the case suspecting lackadaisical diagnosis of cholestasis, the ultimate flaw that we found was the lack of response to her decelerations. That was hidden from us, not hidden, but not brought to our attention.
Now, of course, I never let them turn the monitors off. I never take a shower while the monitors are there. I ask them to face the monitors towards me so I can see them constantly, and I ask how she's doing every time I see a nurse or a doctor.
Bethany Weathersby:
Okay. Let's move on to your second pregnancy. You were brave enough to try again?
Emily Rusch:
Yeah. Cooper, it actually took me 15 months to conceive him, even though it had been-
Bethany Weathersby:
Wow.
Emily Rusch:
So that was hard because then I started to wonder if I would even get to have more children and the trauma that would be. We did conceive. We needed a little bit of fertility meds and we ended up doing an HSG to clean out my tubes, but we got him here.
My first doctor's appointment, that initial blood work, they had done the blood work, and I was supposed to go back for an ultrasound on a different day. Instead of going to ultrasound room, my doctor, not a nurse, escorted me from the waiting room to his office, which was weird.
Bethany Weathersby:
Oh, no.
Molly Sherwood:
Oh, that's when you know. It's the office meeting.
Emily Rusch:
Yeah. I was there for an ultrasound. We were not in the ultrasound room. He said, "I just want to let you know we got your blood work back and you have antibodies, and we're just going to hope to get you to 28 weeks."
Bethany Weathersby:
Oh my goodness.
Molly Sherwood:
Wow.
Bethany Weathersby:
That's how the diagnosis was delivered.
Molly Sherwood:
Wow.
Emily Rusch:
I don't recollect anything being shared about what the name of this disease was or what was happening to my baby, why the baby might be premature or need to be premature. He said they were working on getting an appointment with the high risk doctor for me and I just needed to go home and wait after my ultrasound to get an appointment time.
Molly Sherwood:
Wow.
Bethany Weathersby:
How did you feel in that moment after everything you had gone through with Addison? You were probably thinking about cholestasis, I'm guessing, and trying to avoid those risks, and suddenly he comes at you with antibodies and a whole new set of problems.
Emily Rusch:
Yeah. Cholestasis is typically a third trimester pregnancy issue. While it was on my radar and we did take a baseline cholestasis labs to have, I wasn't too worried about it yet. I was just thankful to be pregnant because I'd waited so long.
So then this whole other thing, when I got to my car, I just sobbed. I didn't understand. I called one of my friends who had seen me through the loss of Addison. She didn't know. Nobody knew. I ended up having to call the office back and I was like, "What do I have? What are the numbers? I don't understand."
They told me at the time that I was anti-FYA with a titer of 1:256, anti-little C with a titer of 1:2, so two, and then anti-big E with a titer of 2. 256 being the highest number, I researched that one first, discovered that there was a critical titer thing, and I was beyond that. I discovered that there needed to be DNA testing because just because I had that titer doesn't mean that my baby was going to be affected and that you can be exposed through blood transfusions, which I had. It's possible that none of this was going to be a problem.
Bethany Weathersby:
How many weeks along were you at that point?
Emily Rusch:
Eight.
Bethany Weathersby:
Okay.
Emily Rusch:
I made it to my high risk appointment at 12 weeks and essentially just said, "We're going to do an amnio at 16 weeks." He also wanted to test my husband and order up the correct labs for his phenotype. Nathan ended up being heterozygous for FYA, which gave Cooper a 50/50 chance of inheriting it. He was homozygous for little C, so there was a 100% chance of that, but my titer was low. It was below critical, so we weren't going to worry about that one unless the titer rose. And he was totally negative for Big D. While I have that one, it's never affected any of my babies. It would only be an issue if I were given a transfusion with D in it.
Bethany Weathersby:
Or was it E?
Molly Sherwood:
I know. I wrote down E.
Emily Rusch:
Oh, you're right. I'm sorry. It's big E. Yeah, not D. D would be a whole nother story.
Bethany Weathersby:
You literally got one of each possibility.
Emily Rusch:
Yeah.
Molly Sherwood:
That's fun. Cool.
Bethany Weathersby:
Antigen negative, homozygous, heterozygous.
Molly Sherwood:
Oh my gosh.
Bethany Weathersby:
You might be the only person I know with that variety of-
Molly Sherwood:
Such an exciting grab bag.
Bethany Weathersby:
... antigen results.
Emily Rusch:
Right.
Bethany Weathersby:
Oh my gosh.
Emily Rusch:
Right. The amnio showed that Cooper got FYA, so we made a plan to do MCA scans. We did one that same amnio day. We were going to start every two weeks, and if we saw the MCA rising, we were going to become more frequent.
At some point in my third trimester, he did rise to 1.46, so I went and got the shots in my bum to make sure his lungs were developing in case he was creeping up. My doctor was very honest with me, which was amazing, that he had not done any IUTs in the past 10 years.
Bethany Weathersby:
Yikes.
Emily Rusch:
And so he was reaching out to doctors who were available to do that procedure.
Molly Sherwood:
That's good at least.
Emily Rusch:
Right. It was really reassuring. It really gained a lot of my trust, to be honest, that he was willing to outsource me rather than attempt something. And really, he said he couldn't even do it if he wanted to because you need an entire team that is capable and experienced and set up for that kind of procedure. It's not just a one doctor decision.
The next day though, Cooper's MoM came down a little bit. I think it was in the 1.3, and so he stayed in the 1.3s until he was born at 37 weeks.
Bethany Weathersby:
Wow. Thankfully he avoided all intervention during the pregnancy, even though he had two of those antigens matching your antibody. So that is a blessing. But how was that delivery compared to Addison's?
Emily Rusch:
We had a scheduled C-section. My doctor was uncertain. This was a totally new doctor, totally new practice. I was driving an hour and 15 minutes to see these different doctors to avoid the people who were involved with Addison.
He wasn't sure how my C-section incision was going to look, considering it was such an emergency with Addison. And so he just didn't feel comfortable doing a VBAC, an induced VBAC on a C-section because I wasn't anywhere close to deliver either, and they really wanted him out at 37 weeks. So I just really didn't have a choice, which was a loss, but not as significant of a loss as losing a baby.
So we scheduled that. It was like 7:00 in the morning that he was born. They planned to bring him straight to NICU. I had toured the NICU prior to him going there, making sure that they were fully aware. They had a file on him before we came. My OB and my MFM had both made sure they knew what they were getting before we got there.
Molly Sherwood:
Oh, that's so great.
Bethany Weathersby:
It is. It is.
Molly Sherwood:
[inaudible 00:33:11] always talk about that being a challenge.
Emily Rusch:
They had him in there. He went straight under lights even before they had his lab work back. He did need lights, but they were able to wean him off lights by three days old, and I was in the hospital for four days, so I actually got to hold my baby in my hospital room while I was still admitted.
Molly Sherwood:
That's wonderful.
Emily Rusch:
He came out of the NICU at three days old, and Addison died at three days old. There was a moment that I realized that he had outlived her, and I just sobbed and I held him. It wasn't fair, but there was no way around it. We were now doing all the firsts that she never got to do. I was thankful, but I was also mourning a new set of challenges that I had not yet had to mourn, amongst the PTSD that I had just relived in the NICU, because you just can't not have that.
Bethany Weathersby:
The C-section, was that hard going into another?
Emily Rusch:
Yeah. I was adamant that I would not be rolled into the OR in any way, so I walked. It was my choice to go in there.
Bethany Weathersby:
Good.
Emily Rusch:
The C-section itself went really well. I got to be awake for it. I did discover that the medicine they gave me in the spinal or the morphine and whatnot was making me super itchy, and so I didn't have cholestasis, but it was like I had it. My skin was so gnarly from rubbing and the oils of your skin and the hormone changes. I hate looking at women who look pretty after birth-
Molly Sherwood:
Oh, the worst.
Emily Rusch:
... because I was not. I was so swollen. I retain a lot of water when I'm pregnant too.
Molly Sherwood:
I really love hearing about ways that you demonstrated your strength and made decisions that were in your control when so much wasn't in your control. I realize you had to accept that just for your children's health, but saying, "I'm going to walk into the OR," that's something you could decide for yourself and execute and kind of get a little bit of something rewarding out of this process back.
Bethany Weathersby:
When you were discharged from the hospital, he was discharged from the hospital, right?
Emily Rusch:
Yeah.
Bethany Weathersby:
That's amazing.
Emily Rusch:
We went home together. He only needed lights. His hematocrit and things were always fine. We just did regular follow-ups with my pediatrician, and for the most part, we got to be happy and normal.
Bethany Weathersby:
Did you feel a little bit more faith in the medical community after that?
Emily Rusch:
I really loved Cooper's neonatologists, especially one of them. They did a really good job communicating with me what was happening, what he needed, because I was going to make sure that they did everything he needed too. The NICU didn't have anything to do with Addison's loss, but that's where all my trauma happened, so I guess I needed to feel hope in that space, even though there wasn't really blame in that space.
I sort of interviewed my OB before I got pregnant with Cooper, and he came with lots of recommendations. He was and is the only doctor in his practice, so there is not a phone system to get to him if I need him. I can access him very easily, and I was never going to get passed around to different doctors or midwives, which was important to me for blood work not getting lost in the shuffle or whatever it was going to be.
So I had confidence in the team that I could pick. I had confidence because of my MFM being willing to transfer me out if something got worse than he could handle or could handle.
Bethany Weathersby:
Yeah, I can see right away a difference in you just hearing you talk about it. You sound so confident now, really in control. You know what you want. You're going to ensure that it happens. You just have this fire in you that I think Addison gave to you.
Emily Rusch:
I didn't mention this, but Nathan had been able to go to every single appointment for Addison, but this was his last semester of school, and that was just going to be impossible. I was driving the opposite direction of his classes for my appointments, and I had a lot more of them because of this high risk pregnancy now.
I had this fear that all of a sudden, Cooper's MoM would jump high and we'd have an emergency transfusion or delivery, so I would not go to an appointment without a friend. A lot of these friends were not people that I had even gone to lunch with before necessarily. They were just whoever was available that knew and cared about me, and that helped me.
I remember actually, there was one friend that I brought that I wasn't super close with, but she had adopted two children that were teenagers at the time. She had never personally seen an ultrasound because she had never carried her own baby. This was like my millionth ultrasound, it felt like, and I'm so nonchalant, like, "Oh, that's the arm and that's the this" and whatever. And she's like, "Oh my gosh, this is so amazing." We were having two totally different experiences.
That happened to be also the appointment that Cooper had the 1.46 MoM. So afterwards, she had to go with me to get the shots. It was the most critical that we got, and she was just dazed and amazed because she'd never been to that. It felt special to be able to share that with her, but she also had to be more of my support than anyone else up to that point.
Bethany Weathersby:
That's a great idea to just recognize your need. I need someone with me, and so I'm going to seek that out even though my husband can't be with me.
Molly Sherwood:
I agree, Bethany. This is the theme I keep noticing in what you're saying is just the ways that you knew yourself and then advocated for things that you knew you needed.
Bethany Weathersby:
Okay, so you're home with Cooper, your healthy boy. When did you start thinking about baby number three?
Emily Rusch:
That was before Cooper was even born, I feel like. I can't stop thinking about the next kid, seriously. They're all just waiting in my brain, and so we just need to get this one out so the next one can come.
Bethany Weathersby:
I love it.
Emily Rusch:
And I want to get them all here so I can get out of this trauma phase also. That's kind of a hidden thing, but if I can just get onto the phase where I don't have to worry about anyone surviving, that would be great.
Bethany Weathersby:
Yes, Emily. You describe it so perfectly because I'm there now. I'm there. It's like, wow, we had 10 years of trauma straight basically in order to complete our family, and we knew that. But it's hard. It's hard. Okay. So you're thinking about your next baby. Tell us about that.
Emily Rusch:
We waited till I had recovered a year from the C-section to start trying again. Adelaide took 15 months to conceive. We knew we were going to need to know her antigen status. We went in for, again, I think a 12-week appointment to make a plan, and then did an amnio at 16 weeks. She was negative for FYA.
Bethany Weathersby:
Wow.
Molly Sherwood:
All right.
Emily Rusch:
It was like, oh my gosh. I didn't get CHO stasis last time, so I had a chance of not getting that again, and I had a chance of having a normal delivery. I even started planning to have a VBAC, which my doctor really didn't like that I wanted that, but I pushed and pushed.
Well, about late in my second trimester, we checked my titers and little C had jumped to 1:32. So it was above critical. And so that was kind of devastating.
Bethany Weathersby:
It went from, was it two and then the next time you checked it was 32?
Emily Rusch:
I think at the beginning of that pregnancy, it was 1:8.
Bethany Weathersby:
Eight.
Emily Rusch:
And so we knew it still wasn't critical, so we were okay with that. I think I was going in monthly to have MCA scans just as a precaution since none of my titers were critical. But there had been a little bit of a time-lapse between when I had had an MCA and when that titer jumped, and it kind of sent us a little little into a panic. My doctor was out of town to be able to do an MCA scan, and his office was closed because he was out of town. And so I ended up going and seeing Dr. Trevett actually-
Bethany Weathersby:
Yes, I remember.
Emily Rusch:
... in Atlanta, because I needed to know. She looked beautiful. She was 1.0 ish. That whole pregnancy. She never got above 1.1.
Molly Sherwood:
That's like mild anemia. Yeah.
Emily Rusch:
Yeah. Because she did so well, they agreed to attempt to VBAC. I wanted to try. My body has never had preterm labor or anything, and so I sort of begged them to let me get a little closer to my due date. And so I got to 38 and two days when I was admitted to the hospital for the VBAC. They were not going to give me Cervidil to dilate, and they couldn't start with Pitocin because the C-sections.
Bethany Weathersby:
Oh, right.
Emily Rusch:
They had to dilate me mechanically in order to induce labor. They had to thread a balloon into my cervix, and that was awful. She had to take a break and come back and try some more because it was just so painful, but they finally got it. I suffered for a whole day or two, now I can't remember really, with that balloon in.
It finally came out and I was just barely to three centimeters. And so they started the Pitocin. For 24 hours, I had Pitocin turned up as high as they would allow it, which I think was like 20, I guess, because the C-sections. I didn't progress whatsoever with the Pitocin, and I was so angry. They broke my water. I didn't progress. Nothing was going to move her. I'm probably the type of woman who would go far beyond my due date-
Molly Sherwood:
42 weeks.
Emily Rusch:
Yeah. And then my babies would be too big to fit.
Molly Sherwood:
Oh my gosh.
Emily Rusch:
And then they would be too sick. I just don't do a good job of getting them out. She ended up being a scheduled C-section, was born in the evening, but because she had done so well in the pregnancy with her MoM scores, they gave her back to me after the C-section, and I got to hold my baby immediately.
Cooper, I didn't get to hold until he was a day old, and it was only to get to breastfeed him for 15 minutes. I only got to hold Addison as she died. I had really built up in my mind the first time I was going to get to hold my living child. I didn't get to have a good experience with that until my third baby where they handed her to me.
She immediately latched and stayed latched. They had to ask me if they could have her to do the blood work, and I was kind of like-
Molly Sherwood:
You're like, "No."
Emily Rusch:
... no, I don't want you to. Please don't. Just go away and let me have my baby for once. But they did her blood work and they gave her back to me. We transferred to the mother baby room, and the NICU called and they said, "We have to take her right now. Her bilirubin is high." It was 8.7.
Bethany Weathersby:
Wow.
Molly Sherwood:
That is high.
Emily Rusch:
I begged the nurse not to take her. I knew she was sick. I knew she needed to go, but I just wanted like five more minutes because I didn't know when I'd get to hold her again. I just didn't want to do it again.
They wheeled me down. I mean, I got out of that hospital bed so fast after a C-section. We went and we watched them as they put the mask over her eyes and turned all the lights on. I was just so angry that I couldn't have her. Her bilirubin peaked at 10.1 the next day before they finally got it under control, and she was on like four different lights. There was one under her and three around her. You walk into the NICU and you just saw this blue light coming from the back.
Bethany Weathersby:
Glow baby.
Emily Rusch:
I'm sure so many Allo moms can relate to the glow babies. Cooper was the same way.
Molly Sherwood:
I feel like I realized many Allo moms the first week or so of their babies' life, all the pictures, they're just like these dark blue glow babies, every single picture.
Bethany Weathersby:
Yeah.
Emily Rusch:
Yes.
Bethany Weathersby:
The little glasses.
Molly Sherwood:
When you get a picture of them not blue, it's amazing.
Emily Rusch:
Right, right. It's so true.
Bethany Weathersby:
Did they give Adelaide IVIG as well?
Emily Rusch:
Yeah. They started her on that immediately. They were so knowledgeable. This was the same hospital, same doctors that Cooper had been born at. She ultimately had three units of IVIG. She ultimately spent nine days in NICU. As her bilirubin was coming down, her hematocrit jumped on board and also started to go down.
Bethany Weathersby:
Going down with the ship.
Emily Rusch:
Yes. There was one day that her hematocrit was at 26.2 and 15 hours later it had dropped to 23.6. She had dropped almost three points in less than a day.
Bethany Weathersby:
Wow.
Emily Rusch:
What we didn't realize was you should check your local hurricanes because if there's a natural disaster in your area, then no hospitals will give you the spare blood they have on hand.
Molly Sherwood:
Wow.
Emily Rusch:
We had to find blood for her that was O positive-
Molly Sherwood:
Oh my gosh.
Emily Rusch:
... CMV negative, FYA negative, not having little C, and big E negative. That was five different qualities that we needed for this blood, and we couldn't find it. We couldn't find it. It took three days from when they started looking
Bethany Weathersby:
So scary.
Emily Rusch:
We actually were looking into donating my blood because if they spin out the antibodies, then they can use my blood for a direct transfusion, but they were hesitant on that because it would've taken six or seven days to process my blood is what they told me. I also was kind of anemic.
I didn't need a transfusion, but they had to get approval from my OB to even do it. He said it was okay, but they were seriously considering because it was becoming so difficult. I tried to figure out how far they were looking for the blood, but I think it came from the Midwest ultimately. That's how-
Molly Sherwood:
Oh my gosh. Wow.
Bethany Weathersby:
Wow.
Emily Rusch:
And they must've flown it by helicopter or something because once they did find it, it was there so fast. It kind of made it feel like it was a big deal. My kid didn't fly a helicopter ride, but her blood did, and that's what saved her life.
Bethany Weathersby:
Doesn't that make you thankful for blood donors?
Emily Rusch:
Yeah.
Bethany Weathersby:
So grateful.
Emily Rusch:
They got her blood and we were able to go home. I was not prepared for her to be in the NICU for nine days since Cooper had gotten to come home with me the last time and her pregnancy had been so smooth.
Bethany Weathersby:
That's interesting to know that Adelaide was FYA negative and so she was only affected by your little C antibodies. But Cooper, her older brother, was positive for both and less affected.
Emily Rusch:
Right. Right.
Bethany Weathersby:
Yeah.
Emily Rusch:
And had a higher titer for FYA. I think my titer with Adelaide, even though she didn't have it, it rose to 512. The impact of just having a 32 little C was still bigger than having a 256 FYA. I feel like every antibody antigen has its own personality and its own characteristics. Little C is a jerk.
Molly Sherwood:
Yeah, it is.
Bethany Weathersby:
He's a jerk late in the game. He's like, "I'm going to let you think I'm nice, but then you'll see my true self."
Emily Rusch:
Which I mean couldn't have come more into reality with Emmett, my last one.
Bethany Weathersby:
Yes. Tell us about Emmett. This is your most recent baby.
Emily Rusch:
We had no infertility with Emmett. We got pregnant two months after trying.
Bethany Weathersby:
Wow.
Emily Rusch:
I was shocked. I was so grateful that I didn't have to go through the infertility journey on top of anything. We didn't need an amnio because we knew he was already going to be affected for little C, and it didn't matter if he had FYA because we were going to treat him the same. Our plan with him was to do MCA scans regularly and increase the frequency as we got closer to delivery, unless MoMs were going up, which he actually had a less than one MoM the majority of the time. He never got above 1.1.
Bethany Weathersby:
Wow.
Emily Rusch:
I was shocked. It was incredible. We kind of assumed that he didn't have FYA because he behaved much more like Adelaide. Later we found out that that was true. He didn't have FYA. He stayed low on his MoMs. We never had intervention. We planned a scheduled C-section at 37 weeks. My doctor was not delivering at the same hospital anymore, so I had to switch hospitals, which really for me meant that I had to trust another NICU.
So closer to delivery, I had the idea that I needed to brief them on the kind of experience we were probably going to have with Emmett, that I needed to brief the NICU since they didn't have records from Adelaide. And so I brought her history with me for them to have on hand.
We had his scheduled C-section. We knew this time he was going straight to NICU, even though his pregnancy was even more simple than Adelaide's in terms of MoMs. He went straight to NICU, immediately started the lights. This doctor did not want to do IVIG. There was no indication that he needed a blood transfusion at the beginning. And so since he had done even better in pregnancy than Adelaide, maybe he wouldn't need one. I say that with sass.
Molly Sherwood:
I hear the sass.
Bethany Weathersby:
I hear the hint of sass.
Molly Sherwood:
We struggle with IVIG too because the literature is kind of confusing.
Emily Rusch:
Yeah. Yeah. No IVIG, no phenobarbital. He did end up needing a blood transfusion. He was seven days old.
Bethany Weathersby:
He needed a transfusion.
Emily Rusch:
Yes. I didn't pull up my notes about what his bilirubin was at, but they were always on top of that. They were ready for that one.
Bethany Weathersby:
So he was under lights.
Emily Rusch:
We actually even went home on bili lights with him because it took longer for him to come down.
Molly Sherwood:
When did he go home?
Emily Rusch:
Well, so since he was born in the morning, I count that day as a day in the NICU. He was in the NICU for 12 days, but technically he was 11 days old, if that makes sense. Yeah, he got the transfusion at seven days old, and during the transfusion, I think his bili went up just a little bit again, and so they needed it to come back down for us to be able to go home.
They wanted me to have an appointment with a hematologist when he was ready to go home. I got that scheduled, but they were only available 10 days later from the day that I called, which I wasn't really comfortable with, but if they didn't have anything else available, what was I going to do? The hospital didn't call to schedule that for me. I had to call and schedule it.
Bethany Weathersby:
Wow. What if you hadn't known that you needed to do that? There wouldn't have been an appointment with a hematologist, I guess.
Emily Rusch:
Yeah. They told me I needed an appointment with the hematologist in order for us to be released, but they didn't give me any help in making that appointment.
Molly Sherwood:
Bethany, when would you have wanted... Well, both of you, when would that followup appointment have been ideally?
Bethany Weathersby:
The first week.
Molly Sherwood:
Yeah, okay.
Bethany Weathersby:
Within the first week of discharge.
Emily Rusch:
The pediatrician wants to see your baby within 24 hours, if not 48 as a stretch, when you take a baby home. I would've liked to see them the next day.
Bethany Weathersby:
So he was discharged at 11 days old, and the earliest you could get his hematologist appointment was how many days after that?
Emily Rusch:
10.
Bethany Weathersby:
Wow. Okay.
Emily Rusch:
Yeah. The neonatologist, I asked him, "How long should I wait to draw hematocrit to check on this blood transfusion situation?" And he said, "Probably about two weeks be fine."
Bethany Weathersby:
Wow. Wow. Okay. How did you feel about that, Emily?
Emily Rusch:
I smiled and nodded and left, essentially. I did not agree, but he didn't need to know. We went to the pediatrician the next day and they drew labs that day.
Bethany Weathersby:
That was arranged by you, correct?
Emily Rusch:
Uh-huh. What we discovered was that he was dropping two points a day.
Bethany Weathersby:
Wow. Hematocrit?
Emily Rusch:
Yes.
Bethany Weathersby:
And he was low already.
Emily Rusch:
Yeah. We were discharged on a Saturday, and by that Friday, his hematocrit was 27. Transfusion threshold with Adelaide had been 25 and I think also with Emmett's first transfusion. So here we are stuck. There's not going to be a hematologist to contact if he continues to drop over the weekend. So I needed to know. I ended up spending hours at the hospital not knowing if I should be in the ER.
We ended up going home hoping that he would be okay until Monday, and his appointment with the hematologist was going to be Tuesday. We were just like, let's just make it through the weekend. Maybe he'll be okay. Sunday, all my family came over to meet him for the first time, and I remember watching them interact with him, and Emmett was just so sleepy and he was so yellow. We had had him on the bili bed for a week. We had brought him to church for the first time that day. It was such a joyous day. And yet in the back of my mind, I'm like, he's not okay. He's not okay.
And so pretty much as soon as my family left that evening, I said, "Nathan, I think I need to take him to the hospital." I wish I could say that that was an easier decision to make. Even though I knew when I saw that he was sick, it's such a burden to have to divide your family and commit to this action that maybe he was fine. Babies are sleepy.
Bethany Weathersby:
Yes, it's hard to tell. But you hadn't gotten the last set of labs back?
Emily Rusch:
It was two days prior that he was 27.
Bethany Weathersby:
I gotcha. Okay.
Emily Rusch:
I took him and I told them at the desk in the ER that he had this blood issue. They took me straight back.
Bethany Weathersby:
Wow.
Molly Sherwood:
Oh, good.
Emily Rusch:
They didn't even go to the first triage level. They gave us a room.
Bethany Weathersby:
Wow.
Emily Rusch:
They came in and they drew his blood. I mean, I hadn't even been there for a half hour before they had all this done. He was at 18.
Bethany Weathersby:
Wow, Emily. I remember. Oh my gosh.
Molly Sherwood:
Wow.
Emily Rusch:
It was so bad.
Bethany Weathersby:
That's crazy. From Friday to Sunday?
Molly Sherwood:
Wow.
Emily Rusch:
He had dropped nine points in two days.
Bethany Weathersby:
Wow. And so your intuition was right. His coloring didn't look right. He just didn't seem well.
Emily Rusch:
Yeah. He was eating fine, which was interesting. He was eating just fine, but he just would not stay awake for long.
Bethany Weathersby:
Wow.
Emily Rusch:
He would wake up, but he wouldn't be as interactive as he had been in the previous few days.
Bethany Weathersby:
If you had waited for that hematology appointment two days after that with that rate of-
Emily Rusch:
He would've had permanent damage.
Bethany Weathersby:
Oh, goodness.
Molly Sherwood:
Oh my gosh.
Emily Rusch:
Permanent damage.
Molly Sherwood:
Oh my gosh.
Emily Rusch:
Not only was that was waiting 10 days for the hematologist, but what if I had waited two weeks-
Bethany Weathersby:
Like suggested.
Emily Rusch:
To redraw his hematocrit-
Bethany Weathersby:
Oh my goodness, Emily.
Emily Rusch:
... like the hematologist had said.
Molly Sherwood:
This is such a good example of the burden. This is what perpetuates women feeling this way, this terrible anxiety and fear waiting for the other shoe to drop, wondering what people think about what we're thinking and what we're worrying about because things like this happen if you are not looking after your children. Not if you're not looking at your children, if you don't happen to know the right things.
Bethany Weathersby:
[inaudible 00:53:18].
Emily Rusch:
Yeah, because none of my family who had seen him that day had any idea that he was so sick. Nobody said, "I think something's off with your baby." You know what I mean? I'm not upset with them whatsoever. They would have not have known. But if I didn't know, then he would've been dead or severely handicapped.
Bethany Weathersby:
I think that that experience with Addison going all the way back to your first baby, it made you know to question that doctor's advice of wait two weeks to check again and to be bold enough to say, "I'm going to take control here and get more monitoring."
Emily Rusch:
Yeah. I mean, when I was prepping to talk to you guys and listening to Molly's episode, I just loved Bethany where you said, "What is the risk of more monitoring and what is the risk of less monitoring?" It was not worth it to wait two weeks and wonder if he was okay.
Bethany Weathersby:
Wow. Yeah. I'm speechless.
Emily Rusch:
How terrible to go in for a lab check. While it did consume a lot of my time, it wasn't like I was asking for something absurd.
Bethany Weathersby:
Right, right. My goodness. You have to work so hard to ensure that your baby does not slip through the cracks because it can happen so quickly.
Emily Rusch:
Right. So then we got admitted to the ICU.
Bethany Weathersby:
He had two blood transfusions and then he was discharged.
Emily Rusch:
Yeah. I think we spent like three or four days there. We got home. I finally had an appointment with the hematologist because we were officially hematology patients.
Bethany Weathersby:
Oh, yeah, right.
Emily Rusch:
We had missed our appointment that was Tuesday. And so I finally got to meet Dr. Yee in Atlanta, and she was incredible.
Bethany Weathersby:
He didn't need any more blood transfusions?
Emily Rusch:
No, he did.
Bethany Weathersby:
Oh, he did? I can't remember. How many more?
Emily Rusch:
He got two transfusions at 20 days old and 21 days old, that was in the PICU, and then another transfusion at 35 days old. And then his hematocrit finally went up on its own when he was 10 and a half weeks old.
Bethany Weathersby:
Wow.
Emily Rusch:
We got to be done with hematology and have her lives back.
Bethany Weathersby:
This is a baby who needed no IUTs. And this is why that follow-up care and monitoring is so important regardless of how much intervention was needed during pregnancy.
Well, thank you so much, Emily, for sharing your story with us and your wisdom. As always, I'm so inspired by you as a mother and an advocate.
Molly Sherwood:
Thank you.
Bethany Weathersby:
I'm so glad that we got to share your story today.
Molly Sherwood:
Thank you. I feel so lucky.
Emily Rusch:
I just want to say I'm so excited to have these stories in something that I can share with the people in my community. I love what the Allo Foundation is doing, but selfishly, I love that I can give people access to my experience without children interrupting the conversation or just not having the time because people can pause and resume and whatever. This is going to help me connect with other people in a very lonely world for this type of disease and experience.
Kiddo:
Whether you are a patient, provider, or otherwise affected by antibodies in pregnancy, we are here for you. We have great resources on our website at allohopefoundation.org. That's Allo spelled A-L-L-O hopefoundation.org.
Bethany Weathersby:
The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Molly Sherwood and me, Bethany Weathersby. It's produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson & Johnson.