131 – Phil Irwin Father of Successfully Separated Conjoined Twin Daughters – Part 2

Transcript:

Dad to Dad 131 – Phil Irwin Father of Successfully Separated Conjoined Twin Daughters – Part 2

[00:00:00] Tom Couch: The Special Fathers Network is thrilled to be sponsored by Rubin Law. A multi-generational law firm dedicated, exclusively to serving families, raising children with special needs.

Phil Irwin: She would text us a, an update here and the messages were always positive to her was doing great. The hearts are indeed separate. And then the text message at one 11. The girls are officially separate.

Tom Couch: Our guest on this two parts Special Fathers Network, Dad to Dad podcast, Phil Erwin. Phil is the father of three girls, including two, one and a half year old twins who were conjoined until just a few months ago.

In this second part, we’ll hear about the recent successful surgery to separate the twins. It’s a fascinating story. And it’s all on this Special Fathers Network, Dad to Dad podcast. Here’s our [00:01:00] host David Hirsch.

David Hirsch: Hi, and thanks for listening to this Special Fathers Network data dad podcast. I’d also like to offer my heartfelt thanks to the following donors who supported the 21 CD Ironman campaign. Each contributed a thousand dollars or more to help keep our programs free. Thanks for your generous support.

Tom Couch: Special Fathers Network is a Dad to Dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.

It’s a great way for dads to support dads, to find out more, go to [00:02:00] 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or. We’d like to offer help. We’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search Dad to Dad.

Tom Couch: And now let’s hear the conclusion of this compelling conversation between Phil Erwin and David Hirsch.

We’ll start by hearing about Phil’s transformation to being a stay at home dad for the twins.

Phil Irwin: Alison had gone back to work. And I went from working or anywhere from 40 to 60 hours a week to being a stay-at-home dad and learning how to, I wouldn’t say learning how to care for things, but learning how to be the guy all the time. You know? Um, I don’t know if it’s any easier one way or the other to be the full-time.

Stay at home parent or the working there because there’s there’s pressure on both ends the [00:03:00] working parents. I always remember feeling like I had to come home and pick up and let Allison take a break because she’s been doing so much for so long. But then as the full-time stay-at-home parents, I remember the pressure being, you gotta make sure these kids do well because people are depending on you guys to keep healthy babies.

So that they can’t be separated. Right. So leading up to that, we had our, we had a, a small surgery in October for tissue expanders to be placed. Our tissue expanders would allow the girls to grow their own skin, to prepare themselves for surgery. So we began doing the tissue expander injections. They have surgery for that.

And two weeks later, they had to be readmitted to the nephew. They caught a cold and we stayed there for two weeks and we went back home and kept doing our routine of doctor appointments [00:04:00] at home nurse visit and just keeping the babies healthy and good and happy. Leading from December to February, their surgery was originally scheduled for February cyst and they got sick on February 6th.

We rushed them to the hospital. Chicago winters are much like Illinois winters. You can imagine what the weather is like in early February, you know, and sick babies in the back of the car. We sped up to the hospital. We called our doctors on the way. And said we have sick girls, but it was really only Sarah.

That was really struggling. We couldn’t keep her AxoGen level above 80 to 85% scariest drive of my life. When we got right outside of U of M, uh, right outside the hospital. There’s there’s a left hand turn you have to make. And then another left hand, turn and electric [00:05:00] with giant hospital circle drive at the first left-hand turn.

Sarah Best oxygen bottle ran out of oxygen and we had a spare. So Allison’s in the back seat holding onto the girls and breathing in this air basket and squeezing them doing a hybrid type of chest compression. You know, you’ve got to imagine you’re doing that to two girls at the same time. She’s squeezing both girls at the same time and breathing in service.

Now I’m switching an oxygen bottle and then the light turned green and I floored it. I know we got everything switched over. We had a pulse-ox meter in the car hooked to her. I can still remember the sound of the BP and we didn’t make it to the next green light. It was such a long line. I put my hazards on and I honked my horn and I floored it.

And I drove around with everybody. Everything just went perfect. There was cars coming. They stop. We went through the circle drive. It’s [00:06:00] like a 25 mile an hour zone. I’m not sure how fast I was going. I know it was 25. I remember jumping a curb in our little lady’s car, honking the horn, flashing my lights and I got out of the car.

Barely had it in park. And Alison handed me the girls and I ran into the emergency room. The girl at the front desk. Uh, she’s just going through the motions, you know, what are you here for? I said, there’s not time. And there was a lot more bad words mixed into that. And somebody recognized me and said, twin dad come with me.

And we ran to the Bay and we started getting to work right away. Meanwhile, back at the car with Kennedy, because we, we, we have Kennedy with us and Allison’s. Texting me and there’s everything. Okay. What’s going on. And here I am with the twins, and I’m also thinking about Alison and [00:07:00] Kennedy. I remember at one point somebody brought Alison and Kennedy right outside the day of the ER, and you’ve got like 20 people around us working on your twins and your three-year-old is right there.

Pretty oblivious to the situation. Typical three year old, thank God. Alison looked at me and she just needed a signal. Like, is everything okay? And I said, yeah, everything’s going to be okay. I ended up getting into a heated discussion with one of the, I don’t know if she was a nurse or what her position was.

I yelled at her. She was really concerned about the girls NG about Sarah butts, NG. And they had this mask that they had a mask to, um, force oxygen into her lungs and would keep her lungs open. [00:08:00] And she had a survey. I had her nasal cannular for oxygen and the nurse was really concerned that she would have to cut those things with scissors.

And I remember yelling at her and just saying, just do it, just cut it. It’s replaceable. Yeah. She, she caught me in the hallway afterwards and apologized and I said, that’s okay. You know, heat of the moment things are happening. It is what it is. And I got into another heated discussion with a very respected ENT doctor.

Uh, he was ready to intimidate both girls in the Bay of the ER. The Bay is where the ambulance has come. And patients are very hectic scenario. And I looked at him and I said, you can’t do that here. Our girls are very special airways. They’re complicated airways. You need a calm, controlled, quiet environment.

You cannot do this here. [00:09:00] And he looked at me like, do you know who you’re speaking to?

Knowing what I know now, a baby that is on a ventilator bag. You can do that for hours. You don’t have to ventilate right. Then you can wait until an ideal scenario. I don’t know if that’s the same for adults, but babies. You can do that. And then luckily our surgeon team was all on staff that day and they’re all new.

We were commonly because I had made a couple phone calls to different people in the hospital. I don’t know we were going to be there. And when we were going to be there and Dr. George came in and he saw the tools to do the innovation. And he said, you can’t do that here. And I just remember, like, I didn’t smile that.

But I remember just like validated,

[00:10:00] David Hirsch: take a step back, Phil. I think it’s the hand of God playing here, getting into the hospital, sort of like in the sauna unorthodox method that you did, which is you as a dad, having that protective spirit jump into play. And then, you know, all the pieces of the puzzle came together in a way that.

You had no control over. It’s just another example of the hand of God.

Phil Irwin: Oh yeah. So the long and short of that is they went to the, they went to the ER, the girls were put under anesthesia. They were both intubated. They both have to be intubated because they’re conjoined. And, and in their liver are separate, but fused and there’s a little bit of blood crossover.

So any medicine that you might get, one girl will then affect in some way, shape or form her sister. So they both have to be intubated and they both have to be under anesthesia. And [00:11:00] after all of this is done, my wife is looking at me and she’s like, I was really scared that we were going to lose her. She goes, weren’t you?

Nope. And she like looked at me and she goes, come on. No, I said, that’s not the plan. That’s not what I saw when I saw our three girls playing in the yard. That’s not what I heard when I knew what we were going to be. Okay. That’s not the end of this book. That’s not the end of this chapter. I knew we were going to be fine.

What degree of fine. That was is unknown, but I, I just knew in my heart that that wasn’t how their story was. So we spent 40 days in the pediatric ICU surgery got canceled. We were in the March of this [00:12:00] year now. And. All of the executive orders and the shutdown start beginning, all non-essential surgeries are postponed or canceled there.

Nothing paperwork-wise saying that the twins absolutely had to be separated there. So after 44 days, the girls were well enough to be home. So the doctors looked at us and said, You guys need to go home. You need to get out of the hospital. And I, I looked at them and I said, well, we don’t know anything about the virus, ICU beds, maybe kind of in short supply, we’re in a pit that has the ability to treat adults.

What if the girls get sick? How can we know that we’ll be able to come here and get the treatment that they need? And they said, well, you let us worry about that. Well, we’re not going to go to any other hospital. We come here, we come to you [00:13:00] about for these questions. So we went home, we had a, a very different pandemic than everybody else.

Our life didn’t change that much. We already lived the, uh, kind of an isolated, quiet quarantine life, because we were scared that both times the girls got sick, they tested positive for the common cold. And the common cold, because they didn’t move air in, can join the same way that you were. I knew when to pneumonia.

So we were very cautious about visitors and being out and about, um, I’m sure a lot of special needs parents, very much understand that statement, you know, uh, where it can be very detrimental. Um, So we went home and we had a nice pandemic together as goofy as that sounds. And that leads up until August and the, [00:14:00] the girl’s surgery was scheduled for August, August, and very similar feeling, driving to the hospital at five o’clock in the morning with my parents, staying at our house to take care of Kennedy.

Although this time there was no visitors allowed. So. If things don’t go well, we can’t bring Kennedy in to see her sisters, or we can’t bring our parents. And we don’t necessarily have a support network there at the hospital with us. So we said our goodbyes to the girls at six 45 or 7:00 AM prepping for surgery began.

And. We have made really, really good friendships with everybody on our team. And they all had our personal cell phone numbers and they gave us the pager where they could send messages, but there was one person in particular. And then with us, from there day, one of knowing [00:15:00] the twins and she was texting us and we stayed out in our car during surgery.

She would text us a, an update here.

And the messages were always positive. Surgery’s going well, the girls are doing great. The hearts are indeed separate and the hearts are separated from the giant sheer pericardium that they have. And then the text message at one 11, the girls are officially separate. So surgery started at about 11 and by one 11 there was.

Officially two separate girls on the same bed and by about three o’clock, the phone rang instead of a text message. And it was the cardiac surgeon and he just called to let us know that his reconstruction of the chest wall went very well on [00:16:00] Sarah. And then a few minutes later, 30 minutes later, another phone call.

Amelia’s chest reconstruction worked very well. And then by 7:30 PM, I want to say everything was done. The girls were sista and closed and the plastic surgeons even took the time to create value buttons for the girls. Oh, well

by 9:00 PM, the girls were up in their room in the view in separate buckets. And it just such a funny thing for us to see separate beds. Two girls and two beds. And for everybody else, you know, anybody passing by that room, it may not have looked normal because an [00:17:00] ICU room typically doesn’t house two patients at the same time.

But here we are two patients, two beds and people would ask us, how are you doing? And I’d say something stupid, like two beds. And, uh, the child life specialist on the floor, he looked at me the one day and he goes, I don’t even know how to empathize with you because you keep saying, look at them, they’re in two beds because that looks so normal to me.

I just smile and say, look, there are two beds, there’s two girls and two beds. They’re not two girls in one bed stuck to each other. There’s two girls and two beds and he’d laugh and he’d say, okay. He goes, that’s awesome. And about a whole month later, Everybody’s discharged at home. And there was a few battles in between where I’m feeling the struggle.

Amelia has always tended to be the stronger of the two when they were kind of joining. Nobody was really worried [00:18:00] about Amelia and surgery. The worry was more placed on Sarah, that she was our oxygen dependent girl. And Sarah just did her normal, slow and steady pace where she rested for two weeks, post surgery got extubated.

And that girl, once she was extubated, she lit up, her personality just would shine. Like we’ve never seen it. And Amelia, that’s a girl. Ended up getting a sore Yvette sore on the back of her head, because as she was intubated, they would try to reposition her back and forth. And one time she would be like looking at the window and one time she would be looking at the hallway.

Well, anytime they placed her body so that it would be facing the window, she would turn her head so that she would face the center of the room. So she could see the doctors and our sisters. So there’s always [00:19:00] pressure on one spot on the back of your head, which has fully recovered by this point. But, uh, so Emilia, I thought the intubation and the sedation for two weeks, and because of that, she spent an extra five days or so in the hospital, recovering.

And now we’re home. And if you never met the girls before August, you would never believe me. If I said these were the twins that were separated at, of, because they’re making up for lost time, they are so fast that you can go across the living room and crawl. Like you wouldn’t believe they’re almost walking

David Hirsch: well, thanks for sharing.

It sounds like a, an extraordinary experience and, uh, You know, the fact that each month, each year that goes by going forward, you know, they’re just going to be known as these twins and the fact that they were [00:20:00] conjoined, you know, it gets smaller and smaller and smaller. And the rear view mirror, you know, you might pinch yourself at some point and say, you know, if you didn’t have the pictures to document that they were conjoined, you know, who would even believe you.

Right.

Phil Irwin: Yeah. And you mentioned that, uh, just last week, Ellison was looking at pictures on her phone. Uh, the transfer them to her computer to make sure she had a couple copies, you know, one on a cloud or one on a computer. And she’s showing me all these pictures. And I looked at her and I said, was any of this real?

Did this really happen? And she said, Oh yeah, it happened. And I said, are you sure this isn’t just some crazy dream? And you know, in the conversations that we’ve had with some of our surgeons, we’ve grown very close with some of these surgeons. Dr.  has said multiple times how surreal this is. And he goes, was any of that real?

Did that really happen? Did we really do this? Yeah, it really happened. But then I find myself [00:21:00] asking my wife the same thing, like is this real life? And it is, and that’s been, it’s been a phenomenal journey and a lot of learning points along the way.

David Hirsch: Yeah, I’m so thrilled, uh, that you find yourself in the situation that you are with the two of you parents, the three girls, and everybody seems to be as healthy as they can be given all the things that have transpired.

I don’t even know how to ask this other than just to be like perfectly straight. Um, I’m a financial person, right? That’s what I do for living. My brain is wired with numbers and. Um, a lot of decisions that we make as individuals or as parents, you know, have to do with money. Right. Can we afford this?

Maybe that’s the better alternative. And have you had to think about the financial aspect of all this? Do you have any sense, you know what the total bill has been from start to where we are now for the girls?

Phil Irwin: As far as the [00:22:00] total cost of everything. I don’t know if I could even speak in to wrap my head around it.

No. I, I remember looking one day, just the day the girls were born, the number was astronomical, uh, for the C-section and the care of the girls. Other than that, I had no idea.

David Hirsch: Do you think it’s hundreds of thousands of dollars or do you think it’s more than a million dollars?

Phil Irwin: Uh, the day that the girls were born was, uh, was a million dollar day insurance settled for less than that, but the bill was a million dollar day.

David Hirsch: Holy moly. Okay. Well, thank you for putting that all in perspective. That is a extraordinary, there’s been some supporting organizations, and I think we need to give them a attribution that would be suitable. Um, you had mentioned the university of Michigan, and I think previously you had mentioned specifically the child life team.

Phil Irwin: Yes. Within the university of Michigan, they have different teams and I was so very glad. My experience [00:23:00] with palliative care doctors proceeding, the surgery were negative for mindset on my hand, when it’s your kids, it’s different. And these doctors came in and they would have a notebook and they would just lead a discussion, kind of like how you and I are talking right now.

And they would take notes and they might circle things or highlight things during our discussion. And the next time we would meet, they would bring up the things that are maybe harder to talk about. Like, Do we have a birth plan? If things aren’t going well, what’s our plan. What do we want? And what would be the ideal scenario?

If we’re not getting the best scenario? I said this a or B situation at work. If we’re in scenario B, right? We get to go back to the operating rooms and spend our time as a family. What can the medical professionals in the palliative care team to do? To make that as positive of an environment as possible and not a sad environment, because it’s going to be a satisfying.

And if there’s no doubt about that, but how can [00:24:00] we celebrate the life of the girls rather than more, the more the loss that might be coming? So the palliative care team was amazing. And then the child life team was very much the same. I mean, leading up to the birth of the rooms. They were very involved and concerned with how do we make this a normal experience for Kennedy so that she understands what’s happening.

It’s still hard for us as parents to understand. I said, do you know, was any of that real try to imagine the mind of a three year old knowing that the girls would be born, can join and they might not make it. So the, the child life team, they actually sewed two clock, baby dolls together to give to Kennedy so that she could picture how the girls work [00:25:00] in joint.

And they made a bear with a recording of the girls as heartbeats. So that Kennedy would always have that. She could always listen to her. Sister’s heartbeats that if things were not. The scenario that we’re in the thoughtfulness of those two organizations within the hospital were a tremendous help to us, um, to deal with the gravity of such what could have been a very devastating situation.

David Hirsch: Yeah. Well, that’s an addition to all the doctors that played critical.

Phil Irwin: Yeah. Yeah. In addition to all the medical doctors that have kind of adopted us as a family and, you know, like I said, uh, I don’t know how often medical doctors give out their personal numbers, but if I have a problem in 10 minutes, I can be calling one of the surgeons or the anesthesia tech or whoever to say.

Uh, we’re on our way to the hospital right now, or what do you do [00:26:00] any more jovial exchange where I send them a picture of the girls? I say, how well do you know your twins? Who is a hospital? Like I’ve never been to before? And I was, my, my experience is limited. I spend maybe three hospitals, four hospitals in my entire life.

Everybody working there. It almost feels like they’re not working there for the money for what they do. They’re working there because they genuinely care and love what they care about the patients that they help and they love their profession. And, and that makes a big difference for parents going into a scenario with a lot of unknowns.

David Hirsch: Yeah. Well, it’s amazing. You’d also mentioned, uh, that there is, uh, you know, Uh, without social media where it would be today, good or bad, um, that there’s a, this unique, uh, closed Facebook group. Tell me something about that.

Phil Irwin: So there’s, there’s a group for, [00:27:00] I think that, I think the heading is families of 10 joined as were grandparents, dad’s bobs, sisters, brothers, whoever was, or related to can join.

Close and very private. I think it’s more for moms than it would be for dads. Moms seem to track and connect a little easier than they act. Sometimes it seems to me that the tone of the group is a little more somber. A lot of families learning about a congenital one diagnosis or grieving the loss of their consent forms.

And I think that just States the case that there’s not nearly as many successful separations as there are losses. So I think the tone of the group just, just speaks to the reality of the diagnosis. You know, there’s, there’s, there’s a lot more [00:28:00] loss than there is. It’s a, it’s a pretty exclusive club that these girls are in that not only are they can join twins.

They are separated. They are formerly,

David Hirsch: and I know that one thing that you’d also mentioned in addition to the hospital child life team, palliative care team, this Facebook group, which is a great resource for young families like yourself. Um, the church family has played a really important role. And I’m, I’m wondering how you’d characterize that.

Phil Irwin: Our church family has just taken us in with open arms and truly adopted us. Pray for us. It’s been a very good fit for our family. Just to have that then alone in your back pocket, they have a group of people that are praying for you and care about you. And you know, no questions asked no judgment. W we care for the guys, you know, is there any pastor, what time he did?

[00:29:00] He did the, he did the financials. Just like, just like you were doing, you know, um, that he, he said, you know, Phil, you’re not working, Allison’s working, you’ve got what, I can only imagine this tremendous medical bills, you know, is everything going okay for you? Can the church support you? What can we do? And I know we’ve been very fortunate.

David Hirsch: So it might be a good segue to talk about that the Special Fathers Network, you know, you’ve just learned about the organization and what it is that we’re doing. You know, putting this network of dads in many cases, dads, with more seasoning, with all the different types of children that they’ve been raising with special needs.

And I would just want to say, thank you for sharing your story and being part of the network, but I’m sort of curious to know. What’s your take on that? You mentioned just a moment ago that it’s difficult for dads sometime to reach out or to accept assistance. So I’m wondering what is it [00:30:00] that helps you, you know, sort of go against that grain or to be more open to that?

Phil Irwin: Well, dad’s are very, very important to the family unit. I don’t know that I would be the type of person I am today without my experience of my grandparents, my, my biological dad, my stepdad, and anybody else that has been a role model for me growing up. Um, and most of those guys are very quiet. They’re not going to resell.

They’re not going to ask for help. And, and being of that stoic nature, w. Don’t typically reach out. I need help or, or just somebody to talk to her to have a beer with her or whatever. The, maybe here in this scenario and this podcast maybe would inspire a dad to be more present and [00:31:00] available. I mean, the positive influence of a dad and a mom working together in their family unit.

Uh, I don’t think there are enough words to speak of those benefits. Uh, a father of a special needs kid being able to reach out and speak with another father of special needs so that they can share that common bond. I mean, like I said, these twins are pretty, are, they are in a pretty exclusive club. None of my friends who are parents will understand, and I know to have everything we’ve gone through emotionally, and then they can empathize, but they don’t understand, but.

A father of a child diagnosed with autism or a father of a down syndrome child will be able to reach out and, and share and bond with another father. And I think that’s very important to help lead their family and help protect their family. [00:32:00] So, uh, I think what you guys are doing here is really, really cool, and I’m glad to be a part of it.

David Hirsch: Yeah. Well, we’re thrilled to have you as part of the Special Fathers Network. Thank you for engaging. And I’m wondering if there’s anything else you’d like to say before we wrap up?

Phil Irwin: The biggest thing that I think I’ve learned in the last two years, and I don’t know why it’s taken me 30 or 32 years to get to this point, but.

You know, this power of positive. We cannot change the scenario in which we are placed, but we can change our attitudes. I lived on the, the little hits of positive for two years of what seemed to be a very dark time and that got us through it. And I hope that my living on the positive also helps get my family through it.

So if you can grab onto those positives, And, and pray about them. I think that, uh, you can have a little [00:33:00] bit better smile on your face at the end of the day.

David Hirsch: That’s fabulous. So if somebody wants to learn more about your situation or perhaps reach out to you, what would be the best way to do that?

Phil Irwin: You can read about our plans.

I’m sure if you search Google search, Irwin conjoined twins you can find us that’s I R W I N. U of M media team. They put out a really, really good video on their YouTube page. And I think that’s just Michigan medicine where you can attend to see, uh, the twins and what they went through. I, I will warn that it’s a little graphic.

Uh, they do show bits of the surgery, which I didn’t. This is fascinating, but somebody might not want to see that the U of M immediate team knew how to pull on your heartstrings when they made that video. Uh, but there’s been articles. Uh, most of them are talking paste article, uh, from the original free press article that was written about [00:34:00] our journey.

And so you can find us there. Uh, typically we’re pretty private people, but I’m sure if somebody really felt compelled to reach out to me, they could reach to you as your Special Fathers Network and you can be placed together. However, need be.

David Hirsch: We’ll include something in the show notes. So it’ll be easy for people to either get to that U of M video or to one or more of the stories.

So thank you for taking the time in many insights. As a reminder, Phil is just one of the dads. Who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21st century dads.org.

Thank you for listening to the latest episode of the Special Fathers Network, Dad to Dad podcast. I hope you enjoy the conversation as much as I did. As you probably know, the 21st century, Monday is a five Oh one C3 not-for-profit organization, which means we [00:35:00] need your help to keep our content free.

Concerned. If you put them there making that contribution, I would really appreciate your support. Phil, thanks again.

Phil Irwin: Yeah. Thank you.

Tom Couch: Thank you for listening to the Dad to Dad podcast presented by the Special Fathers Network. The Special Fathers Network is a Dad to Dad mentoring program for fathers raising children with special needs through our personalized matching process.

New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers, go to 21stcenturydads.org.  That’s 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help, or we’d like to offer help, we would be honored to have you join our closed Facebook group.

Please go to facebook.com groups and search Dad to Dad. Also, please be sure to register for the Special Fathers Network, biweekly zoom calls held on the first and third Tuesdays of every [00:36:00] month. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story.

Please send an email to David@21stcenturydads.org

Tom Couch: If you enjoyed this podcast, please be sure to subscribe on iTunes or wherever you listen. The Dad to Dad podcast was produced by couch audio for the Special Fathers Network. Thanks again to Rubin Law for supporting the Dad to Dad podcast. Call Rubin Law at (847) 279-7999 and mention the Special Fathers Network for a free consultation.