Stronger Than – Craniosynostosis – with Allie McCathren

CHRIS: Hi this is Chris Sizemore and you’re listening to the Stronger Than podcast. I have Allie McCathren with me today. She’s an incredible human one of my very best friends. She’s also an amazing textile artist, a wife, and a mom and just this super cool person who I’m very excited to introduce you to today. We both kind of met at the apex of our tragedies.

ALLIE: Hi, thank you Chris. Yeah that never occurred to me before, but we were very much at the height of both of our tragedies.  About a month before my youngest son, Jack, was born, my husband was laid off from his job which put us into this huge spot of stress to begin with.  And then in my very first indication that something was not right with Jack was as I was giving birth to him, it was very noticeable to me that his head was extremely large, and after he came out a bunch of the nurses were commenting and saying “Wow his head is really, really big”

CHRIS: Which is exactly what you want your nurse to say

ALLIE: Right? I know thank you, I was there and was very aware of that. But then about a week later at our pediatrician check up she looks really concerned and she told me very gently that it was really important for us to go get an x-ray and I said oh like you mean maybe in a week or a couple weeks from now and she said no today That was the first time that I really felt that like gut punch of fear. The next day I remember, I was sitting in my chair in my bed and on the phone with the pediatrician who I’m so grateful to for the level of care that she took with me because she was so completely empathetic and gentle really is the word I keep coming back to. When she said this is really a thing that he has he’s going to need surgery for it and there’s no way around it. The thing that he had is called Sagittal Craniosynostosis and it meant that the plates in his head were prematurely fused. In babies heads, they’ve got these plates that are not fused and that means that they are able to overlap as they’re being born and then it all sort of resettles and it needs to not be fused as they grow because they grow so very quickly their head needs to able to expand and those plates typically are not completely fused until they are six years old.

CHRIS: And you had him completely naturally, yeah?

ALLIE: Completely naturally, zero medication.

CHRIS: As a testament to who you are and your strength on its own, that’s incredible. The whole idea during birth is that their plates in their head are still malleable they’re not fused.

ALLIE: Right.

CHRIS: It’s like why babies have pointy heads, this is a thing that we see. That is a normal part of the birthing process and this was not normal. Which is incredible that you were able to do that on it’s own, which I think you had said before that the doctors had even said, “How did you have this baby naturally?”

ALLIE: Yeah, they were all shocked. Like every time I was filling out paperwork later and it would be like, “How was the baby born?” And I would say, vaginally, and they would all just kind of look at me like, “how did you do that?!”

But in this case the ridge down the center of his head was already fused and had been while he was born. So that is why his head was very large. That is why it was so very painful to give birth to him, beyond the obvious, because his head would not shrink down at all.

When I realized we needed to have a surgery that our infant would need to have a surgery I think that’s the moment where I just completely went into shock. We have three children all of a sudden and the youngest one has this special situation where he is going to need surgery. We don’t know how we’re gonna pay for it. We don’t know how we are going to pay for our mortgage. We need health insurance, which we don’t have. We have a continuation COBRA, which is costing more than our mortgage. It was just beyond.

And so what I could focus on at that point was: I am a mother, I need to see my kid safe. That is my number one that’s what I’m doing.

CHRIS: And I think that is something that I hear in so many tragic stories is that in an in an effort to get through it we just have to like simplify our brains to like these are the tasks at hand, and this is what I can control. Like I said in the first podcast, we need to stop measuring up our tragedies. A tragic event is a tragic event and the brain response is the same regardless of what caused it. and you were already starting on a healthy path by going, “OK I’m just gonna focus on the things that I can do”.

ALLIE: Thank you I did not feel capable or amazing in that time.

CHRIS: None of us do right?

ALLIE: Yeah it was like I think it was a trauma response.

The hospital system was wonderful because it felt like they sort us just picked us up in their big old hospital hands and just carried us forward gently. Over the course of the next few weeks we had a series of scans, and MRIs, and all sorts of, there were a couple more x-rays, it was just a lot. In that time I kept wondering, like second guessing, is this something that really needs to happen? Am I being a bad mom for just going with it and saying “Oh yeah, this one doctor” but it wasn’t just one doctor of course at that point it was all the doctors right?

But in my mind I was like they’re telling us that he needs this thing, but what if he doesn’t and what if he goes in there and dies and it’s my fault? I would just hold him and rock him and just watch him as he slept and just think is this the right thing? Is this the right thing? What am I doing? And over the next few weeks I watched as his head shape changed. It was noticeable because those bones, those plates, were fused already. That meant that the middle part of his head was kind of like this saddle, almost, and the front and the back were elongating because he was growing, but he had nowhere to go.

Part of me was thinking like, well that’s just him. He’s just cute and that’s just what he looks like. This is my son but the I kept thinking like “No no it’s really scary like if we don’t get this, I mean we’re going to get the surgery obviously, but if he didn’t have that surgery if we lived in a place where we didn’t have this access, then his brain would be damaged. He wouldn’t be able to function as he otherwise would have.

So we were in this waiting period where we couldn’t get the surgery immediately because he was too little to handle the anesthesia. So we had to wait for him to grow big enough to be strong enough to handle it, but also not wait so long that his brain was risking damage. So it was this waiting period, and nine weeks I guess now doesn’t sound like that much but it felt like an eternity at the time. And I remember as we got closer to the date, June 9th, it’s just always in my mind, June 9th, that’s the anniversary of it.

As we got closer to that date I just remember thinking OK well now there might be a limited number of pictures of this kid like every picture that I take is it could be one of the final ones. Like if he goes in there and if he dies in surgery like that might happen and I remember there was a point, my darkest point as a mother, where I sat and I as holding him and I told myself if he dies I have to be OK. I have to be OK with that because I have two older kids who need me. They need me to be OK and take care of them and just that was a horrible thought to come to. One that really left me with a lot of damage I think I mean it at the time I think it was it was something that I had to tell myself to keep going forward, but still now I’m feeling the effects of it and that was almost six years ago.

As we got closer to, I would take more pictures of the three of them together, my three children, and there was one that I have the night before the surgery where I have them all sit on this quilt, I wasn’t quilting at the time we will get into that, but it just happened to be a quilt on our floor and I said “OK, just lay down next to your brother, and I wanted a picture of the three of them, because if something bad happened, if the worst happened, I wanted a picture of the three of them together. So I have that picture and, looking at it now, that’s all I can think, is where my mental state was at that time. So it’s not a picture that brings me joy it’s a picture that makes me really sad even though they are all smiling.

CHRIS: I totally get that like if I go into my story history on Facebook it’ll be like: “six years ago on this day…” and legit last night I looked and I wasn’t even specifically looking for that. I was looking for something else and it was like…”six years ago today” and it was just a picture of our garage organized and it was 17 days after that our house burned down. And so I look at that picture and it’s like all these like pre-fire pictures are very much in a little way like revitalizing the trauma a little bit because not only do I kind of mourn a little bit what that was, but also I see it burned. I’m sure that that picture does a similar thing for you. It is this like what if he hadn’t? The emotion and the intensity behind that image.

ALLIE: Right it’s just it was, it’s interesting to me how a picture, you think when you take it you think that you’re just gonna see what you see in the photo. I still do this where I think it’s just gonna be: “I’m taking a picture of this subject” and that’s what I’m going to remember, but if it’s a traumatic moment like that, if it’s a high stress moment, you are not just taking a picture of what’s in front of you. It’s like you’re taking a picture of everything. I always forget that that’s a thing. I think, “I’ll just take this for later” and I’ll forget how I was feeling. No! I remember.

The day of the surgery I think I was up for I don’t know I think 30 hours or something for that whole ordeal. I remember every single minute of that day. The night before I knew I had to stop nursing him at midnight because his stomach had to be empty. And I just remember holding him in bed and thinking OK he’s probably gonna wake up at two and he’s gonna be hungry and I can’t feed him. And that’s sure enough what happened and I’m holding him trying to reassure him but he’s next to me. He’s on my chest he knows he’s right next to the food and he can’t have it, so he’s upset, he’s crying I’m pacing around the room. It’s not time to go to the hospital yet. It’s only two in the morning, so I’m walking around the bedroom just holding him as he’s crying.

I’m trying to sooth him. My husband ended up holding him because he at least wouldn’t be next to the boob. And then I think at like 3:30 we drove over to the hospital.

We were in this bigger waiting room, with a couple of other sets of parents, and everything was dark, everything was quiet. We were just pacing around this room holding Jack, who at that time had begrudgingly fallen asleep. Just pacing around and around the room and making eye contact and kind of doing little nods and smiles with the other parents there.

And that was really stunning too. I was very aware that while this to me was this huge traumatic moment and it was, and not to compare trauma, but these were parents who, some of them were there for their kids fifth, sixth, eighth, sixteenth surgery. These were parents who knew the inside of that hospital by heart and didn’t want to. I was humbled to be in their presence, truly.

We then went to a different waiting room, it was just us in there, it was smaller, this was like right before the surgery. We were given this like one size fits all surgical outfit for Jack to wear. He was two months old and this outfit was made for kids up to age 5. So it was basically just like a giant blanket in the shape of clothes for him. I mean it was huge.

And my husband held him because I knew that the next step was that we would have to hand Jack over and I knew that I couldn’t do it. I was not strong enough to do that. In that moment I felt guilty that I was not strong enough to hand over my baby physically to the doctor. I felt like I let him down in that way.

And then the doctors came in. My son had a neurosurgeon and a plastic surgeon. These are also people who live forever in my heart. The neurosurgeon was direct, straight forward, to the point…that’s what you want in a neurosurgeon. She’s gonna get in there, she’s gonna it done, she’s not really there to socialize. Thats OK. The plastic surgeon was the one, she looked at me and she held my hand and she looked right into my eyes and she said, “I know you’re worried, but do not worry because I’m there, I will be his mother and I cried and I thanked her and that will always stay with me that moment. That’s incredible.

They went over the surgery again for like the eighteenth time. We knew exactly what was going to happen. They were going to make an incision at the front part of his head and at the back and then cut out a rectangle of skull like the top middle bit and then remove it through the incision. And then they said OK and up until this point I had had all these tasks, right, there’s the task you drive downtown, you sign in, you write your name here, you go in, you get the x-ray you come back out. Here’s the next task. We make an appointment with this person. There’s all these tasks and that was it. That “OK” all the tasks were done. That’s it. Now we are at the surgery and then I just burst into tears. It was like the floodgates breaking of this is it, no more tasks, now you just have to feel it. Yeah,.

Rob handed him over and we held each other and cried and went back to the main waiting room with all the other parents. There were way more people, there were kids running around, the siblings of the kids in surgery. There were all these parents who were kind of silently supporting each other. We all knew why we were there. Every time anyone made eye contact it was like this unspoken agreement that this was a really crappy day for all of us and we’re all like holding part of our heart in a different room and just there was this tension, but also reassurance, somehow, of being with other people like that.

And there was this wonderful man, who was the patient liaison, and this guy was filled with energy. He was just like this ball of happiness who would come in and say OK what do you need? What have you got? You look like you’re cold. Do you want a blanket? Im gonna get you a blanket. Do you need a coffee? Do you need a smile? Like he was just there to pep everybody up and distract them, and it was wonderful.

CHRIS: Can we have that guy just through like regular life?

ALLIE: Right,

CHRIS: Like you’re having a bad day, you need a coffee or a hug.

ALLIE: Here’s a smile

CHRIS: Where’s that guy everyday?

ALLIE: He was wonderful. There was somebody in the room, in the surgery, who’s job it was to text and update this app that we download to say exactly what was happening in there. So I would get a text, it would say right now he’s under, right now they just made the first incision, right now like he’s doing well. This is happening, like constant updates.

CHRIS: That’s amazing.

ALLIE: It was wonderful yes, I’m so glad that’s a thing. But they did pull us in. They said “Ok it’s done.” We met with the surgeons again they said everything went great, it’s all great. They pulled us in and I remember this moment where I was still in complete shock but also the biologist part of my brain was going and I was like can I see it? Like I kind of want to see the skull bit that you took out.

CHRIS: Yeah!

ALLIE: I know. And they were really creeped out by that I think. They were like, no, that’s not a thing we’re gonna do. Which I think is probably for the best looking back but also I’m curious, I wanna know.

CHRIS: No, I get it because after I had Issa I was like can I see the placenta and the nurses were like, “what?!” And I was like, I made that, its gone and I wanna see it.

ALLIE: I wanted to see it too

CHRIS: I totally get that

ALLIE: Its so cool, its like this big tree

CHRIS: I’m sure there are listeners that are like you guys are weird, but then there’s other people who are like yeah, no 100 percent.

ALLIE: But I think they were a little appalled by that question maybe not. I mean they are scientists too, they’re surgeons, it’s whatever.

Then I went up to see him, he was in the ICU and that was that was terrifying because he was completely gray and out of it and swollen. I held him there. I was able to hold him again and at that point you know I’d been awake for I don’t even know how long. My brain is spinning and I just wanted to hold him and not let go.

Finally he woke up and started moaning and they ended up needing to give him more blood. I have a picture of that time too, Rob took a picture of me holding him and we’re both just gray everything is gray. My face is pale, I’m wearing a gray sweatshirt, our son is gray, there’s one line of red going in, its the line of blood going into him and I look like deer in the headlights panic in that picture.

And at this point, its like all of the things were done, all of the tasks were done. We were on the other side of the surgery and this whole time I’d been focused on, what’s the next here’s a thing and now it was like we were in this free floating space beyond the surgery and it’s ”Ok now with the rest of your life”  and I was still in a full trauma response for what was happening.

And what had happened and it was fine and for some reason I couldn’t process it yet. But I remember I was walking around like making sure OK where is the nursing room, where’s the pumping room, because I have never been able to pump breast milk. It just doesn’t work, but now we are in a spot where I have to because there’s no way I am not nursing this kid. There is no way I’m going to lose this and he can’t nurse for the next however long. So he’s an infant, you need to support his head but I can’t support it because he’s had this surgery. Everything is swollen. It was this question of like I wanna hold him but I can’t hold him. How do I hold him? And I felt like this, I felt like, I I just didn’t know what to do or how to do it.

One of the nurses on the floor looked at me and she said, “are you a brand new mom,?” It was sort of like, why are you freaking out so much? Calm down. She didn’t say that but that was definitely the tone.

CHRIS: Right.

ALLIE: I was like, no this is my third. And she said “it’s fine”. and I was like oh my God the most traumatic thing just happened and you see this every day.

Another thing that happened that I now know was definitely in the trauma space was I had picked out this song and I had it on repeat on my phone, right near his head, and it was just this little piano, gentle song. I had played it beforehand and I wanted him to know that we were there. That was the purpose. I wanted him to know that he wasn’t alone, we were nearby and hopefully he would be comforted by that. But at the same time, deep down I told myself that if that song stopped playing he would die.

CHRIS: Oh wow.

ALLIE: So we had to keep playing that song.

We were able to go home the next day, which was crazy. His whole head was swollen but definitely noticeably more round than before. It was like this instant change where it used to be super narrow and now it had width to it because it was finally able to relax. But they send you home with essentially some Tylenol and a Band-Aid. And they are like, “OK that’s it, you’re done come in for a check up on this date”, and I was at home holding him after all that trying to figure out how to hold him trying to figure out how to nurse him, and sitting in that same chair again where I had gotten the news just eight weeks earlier that that needed to happen and I had this specific clear thought of “I’m going to stop feeling now I have to stop now because it’s too much”. And I just shut it off. I was able to do everything I needed to do, but I had to remove myself, like physically, mentally, emotionally remove myself because it was too much feeling. That was this active decision that I made and it was very strange.