130 – Phil Irwin Father of Successfully Separated Conjoined Twin Daughters – Part 1

Transcript:

Dad to Dad 130 – Phil Irwin Father of Successfully Separated Conjoined Twin Daughters – Part 1

[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: I just got this wave came over me that just kept saying over and over again, you guys are going to be okay. You will be okay.

And of course, I didn’t know what that meant. I didn’t know what all came out like. Okay. You’re going to get through this. It’ll be hard. Or you guys are going to be okay, you’re going to have to proceed someday. I don’t know what that meant, but I just had this way, but we are going to be okay. And I don’t know how much time later in a separate appointment I was spending that time in prayer.

And I just had this vision of three Sandy blonde hair kids playing in the yard.

Tom Couch: That’s our guest, Phil Irwin on this two parts Special Fathers Network. Dad to Dad podcast. Phil is the father of three [00:01:00] girls, including two, one and a half year old twins who are a congenital mind until just a few months ago.

When surgeons successfully separated the two in this first part, we’ll hear how Phil and his wife, Alison discovered that they were going to have twins and that they were conjoined. It’s a fascinating story. And it’s all on this Special Fathers Network, Dad to Dad podcast. Here’s our 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. Thanks for [00:02:00] your generousity.

Tom Couch: 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 dads to support dads, to find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or would 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 part one of David Hirsch’s conversation with Phil Irwin.

David Hirsch: I’m thrilled to be talking today with Phil or a win a Petersburg, Michigan. Who’s an electrical control technician at NLB corporation and a father of three young girls, including one and a half year old twins who are conjoined until they were successfully separated just a few months ago. Phil, thank you [00:03:00] for taking the time to get a podcast interview for the Special Fathers Network.

Phil Irwin: Happy to be here. It should be pretty fun session.

David Hirsch: You and your wife, Alison had been married for seven years now. The proud parents of three daughters, Kennedy who’s four and one-year-old twins. Analia and Sarah Beth, who are co-joined until their successful separation. A few months ago, let’s start with some background.

Where did you grow up? Tell me something about your family.

Phil Irwin: I grew up about an hour West of Petersburg. Petersburg is in Southwest, Michigan, and then rural County. I grew up in Hillsdale County in Pittsburgh, Michigan. It’s very small town that we didn’t even have a stoplight. Uh, you know, there’s the typical party store and a feed mill, very small school.

We were one building K to 12. I think my graduating class was about 47. I think there was less than a thousand kids from K to 12. So very small [00:04:00] town, rural school, most kids at a farm background or somebody at an agricultural background, but sometimes, you know, it seemed like everybody was a farmer or in a machine shop or a manufacturing scenario, very typical of a small town in Michigan setting.

David Hirsch: Got it. So did you have siblings when you were growing up?

Phil Irwin: Yes. My dad and my mom each had one boy, uh, before they got married and then they got married and had myself and my little brother. And then after they divorced, um, my dad had one more daughter

after that. Okay. Well, it sounds like there’s a little bit of a, his hers, ours, and his, if I followed the conversation and, uh, are you close to your.

Siblings step siblings for that matter.

I don’t think we’re as close as my wife is with her siblings, [00:05:00] but we all have kind of the relationship where we don’t speak for a month. It’s almost like the old friend that you can always call up and talk to you. We don’t have to speak every single day, uh, to maintain our healthy relationship.

David Hirsch: Okay. Well, from what I recall, you have. Three brothers and one sister.

Phil Irwin: Yeah. So I want to say it was three years ago. My sister had been in a car accident. She’s we actually use Elisabeth’s name to help name. Sarah Elizabeth was young. She spent a few years post high school playing.

Typical of her age and the kids in her age where they just didn’t really know what they were doing. She didn’t go straight to college. She kind of messed around with this guy or that she worked at Wendy’s for awhile. And [00:06:00] then when she got pregnant with her fiance, it was like a switch flipped for her.

And she, she saved up enough money to take cosmetology classes. And she was just about to have her license and be able to go in a salon. And she was, she was in a terrible car accident. Uh, she passed instantly the kid that hit her, he was reckless driving, no insurance, no license tested positive for marijuana.

And he was reckless. He was driving. 80 or 85 mile an hour and 35, my sister and her fiance. They had the right of way when they were returning and there was no pain or suffering. There was a direct impact. And

[00:07:00] so she had a little boy Cyrus. Uh, he is one younger than my daughter, Kennedy, who is turning four next week. I don’t know if that’s better or worse for Cyrus that the didn’t get to know his mom very well. But I think a lot of these big life changes for kids when they happen at a much younger age, it doesn’t make the scenario to earth shattering for them.

He’s got a very good family unit with his grandparents and his aunt, and they do a really good job.

David Hirsch: Yeah, well, sorry for your loss. It sounds very tragic. Uh, she was what? In her early twenties.

Phil Irwin: Yeah, she hadn’t turned 21 yet. She would have been 21, the following February.

David Hirsch: Wow. That’s, that’s pretty heavy. So I’m just, uh, relieved to hear that, uh, the dad and the son [00:08:00] are okay and that, uh, hopefully they can rebuild their lives out of the tragedy that took place that you described.

So. It sounds like you’ve had a couple of father influences. You’ve got a biological father and a stepfather. I’m wondering how would you characterize your relationship with your father and then separately with your stepfather? For that matter?

Phil Irwin: My biological father, uh, married until I was four or five and the long and short of it is my dad chose a different lifestyle.

He needed a lot of input from his parents, even at a, at an adult age after my mom and dad divorced, he, after some period of time, he ended up moving back in with my grandparents, his parents, and typically is when he is the most stable. My dad [00:09:00] suffers from alcoholism that wasn’t nearly as bad when I was younger, as it is now.

I think a lot of what goes on in his life has just grown and grown and grown, you know, for awhile it was, it was very functional and how the job had a good job. He worked in a Foundry, uh, in the nineties during the manufacturing boom of the nineties, he was making very good money. He was always making very good money, especially when he was living with his parents, he would pay them rent and they wouldn’t help make sure he was taken care of.

And so. Like I said, each one’s a different lifestyle. And having the family unit together wasn’t necessarily what his inner drive led him to. On the other hand, my step-dad Steve, he and I are very close. We probably talk on the phone or text every day or every other day, Steve was the type of guy that he was, you know, [00:10:00] He worked in the manufacturing industry.

It didn’t matter what, what shift he was on, whether it was first or second or third, when he got home with work, if we wanted to play cash, whether it was football or baseball or playing basketball, he could have worked 14 hours that day. And not really felt like that. He never really said no, it was quite often.

You’d see. My little brother, Luke and I in the yard playing football or basketball until, until you had to turn the lights on, or you got, you got beaten with a baseball because it was too dark to actually catch it. Everything that my biological dad wasn’t present for my stepdad was Steve was also very good about respecting boundaries.

He would always make sure to never say any ill words about my dad and make [00:11:00] sure that he showed my dad respect.

Apparently she liked that she liked that definition

David Hirsch: listeners. I wish they could see a picture of what I’m looking at. There’s Phil’s sitting on a couch, very relaxed, super chill with one girl on one side and one girl on the other side. And they’re just. Sort of like, uh, nothing’s wrong, right. Everything is just copacetic.

So it’s beautiful. Um, so, but I’m sort of curious to know, when is it that you learned that you were having twins and then was there a lag in the diagnosis that they were conjoined?

Phil Irwin: No, the same day that we found out we were having twins. We also found out that they were. We had been planning on having our second child.

And Alison told me that we were having twins and then we were having a baby. And then we went through the normal routine. I also went in for scans every once in a while. I [00:12:00] went to the very first one. We actually, weren’t going to figure out we weren’t going to determine whether we were heading a boy or a girl.

Alison was convinced she was having a boy because the pregnancy felt so different than the first one, our little girl Kennedy. And we went into that and I remember the technician had been running late. I think she had a dentist appointment or something like that. So she, I remember her apologizing because her mouth was numb.

So she didn’t really want to speak very much. And she, she waved the line over and, uh, she immediately stopped and shut off the monitor and asked to our doctor was, and we told her who our doctor was and she said, okay, I’ll be right back. And it took forever. I don’t know if it was five minutes or twenty-five minutes, but here we were wondering.

You know, what did she see? What was wrong? You [00:13:00] know, we felt the baby, she knew the baby was there and moving just weren’t. Sure. And the doctor came in and wave the wand and she said, okay, you’re having twins. And I started to get excited and she goes, no, she goes and enjoying their chest to chest. And our hearts are very, very close.

Is there. I’m sorry. There’s there’s, there’s nothing we can do for you here. I remember she said that her heart was breaking for us

was the way she described having twins,

conjoined twins. Most enjoying twins. I think it’s one, a hundred to 250,000 live versus most are lost to be in a stillborn or miscarriage early on. [00:14:00] Those that do make it to birth will typically only live or about a day, do live longer.

It’s not very often that conjoined twins can be separated at every set of enjoying is just because I’ve learned so much about enjoying twins and twins in general in the last year, uh, only happened two identical twins at some point when the end decides to separate to make each win. What happens with enjoying terms that end doesn’t fully separate and depending on where that separation happens, that’s where the girls are ended up being conjoined in our case.

The girls were enjoying chest to chest from just below the clavicles or the start of the star to their [00:15:00] shared belly by, and a lot of times when a conjoined twin scenario happens like ours, it’s not known how the heart has informed that the heart is also a very complex. Chin joined Hart with extra bounds and openings, or if there’s two fully separate hearts.

So back to the day that we found out about the twins, I remember that doctor was, she talked to us about, you guys had an unfortunate decision to make. You’ll have to think about the life and quality of your children and what you can provide for them. It will be very hard. To get them the proper quality of life.

And in my mind, it was a very closed book for her, a closed opinion, no Swain. That the best thing that that doctor [00:16:00] did for us was to refer us to you about her high-risk pregnancy. We went there the very next day and got a scan. And then I wasn’t sure what we were going to see how we were going to be treated.

I had no idea what we were in for and the atmosphere there was, was very caring, very endearing, and let’s just learn. Let’s just learn everything we can before making any decisions. And wait, we went home from that very first appointment, not as devastated as the neighbor before, but boy, it was pretty dark.

For the next seven weeks or so, you know, there was echocardiograms, there was MRIs, I’m sure behind the scenes, there was more doctor meetings and I could ever care to Atlanta knowing about there was one particular appointment. I think Alison was 27 or 28 weeks. And we met with Dr. , [00:17:00] who was the lead surgeon on our case for separating the plans.

And I remember so clearly he, he came in and scrubs. And he said, you know, you’ll have to forgive me. I was on vacation for a week. I haven’t been fully briefed on the details of your case, but just reading through some of the notes here, I don’t know that we’ll be able to get to this point, but it doesn’t seem out of reality for me that these kids could be separated.

And that was the news we both needed to be here. We went from a very jarring and emotional console to a guy kind of hypothesizing. Yeah, I think we can. I think it’s possible that these girls could be separated. We have to learn a lot more about them, but it’s definitely not out of the realm of possibility.

It ended up being a pretty good point in my memory bank of appointments, versus that that was one of the [00:18:00] better ones.

David Hirsch: A very uncertain situation, you know, at the local doctor’s visit, you know, learning about the twins and the fact that they’re conjoined to going to a world-class, you know, medical institution, like at U of M teaching hospital, where they’ve got the best of the best. And somebody shined a glimmer of hope on the situation, which hopefully helped.

You know, part some of the cloudiness and, you know, it sounds like it was a roller coaster of a ride from that point, going forward with all the different doctor’s visits. And, you know, we got to prepare you for this situation. We’ve got to prepare you for that situation. And everything seemed very tenuous.

Uh, did it go quickly or did it just seem like it was like it’s taking forever

Phil Irwin: a little bit of both at that point. [00:19:00] We were scheduled for weekly appointments. Every Thursday, Alison had a weekly ultrasound. So I took every Thursday off and went to the hospital. He went to every ultrasound, looking back.

Alison says I was always positive. You know, at the end of most, every console. The doctors would ask, you know, what is your guys’ best case scenario? And I would always say someday, we will have three car seats in the car, and they’d always kind of looked at me and smile. And I would kind of like, look at me and I don’t know if she was rolling her eyes physically, but she may have been all in her eyes in her head.

But I mean, that’s, that was the best case in my mind is that eventually, someday we’ll have three car seats in the car. So, like I said, we had, we had weekly appointments where we got to see the girls, not really knowing what was going to happen. If the girls were definitely going to be able to be [00:20:00] separated.

We, we brought my mother-in-law one time to an appointment so that she could see the girls because we started thinking about like, boy, this is hard for us, but they might be really hard for grandparents that I felt helpless through this entire thing. But that’s biological instinct role is to protect his family.

And there was not one thing I could do to protect us from what was about to happen. You think about that. And then you think about parent’s role. We started including my mom and my mother-in-law so that they would get a chance to meet the girls. And we would take videos of the scans, the ultrasounds. So that Kennedy might be able to see her sisters on the screen.

One day, we tried to make the best of it.

David Hirsch: Well, thanks for sharing. Um, so at what point were the girls born and how did that transpire?

Phil Irwin: The week before the girls were [00:21:00] born, we came in for Allison’s 33 weeks and. The technician saw something. Didn’t her reaction by the way of seeing something was much better than the first technicians have seen something, she saw us, she kept the monitor on yes.

She left the monitor on and she didn’t leave the room. He said, okay, your scan is done. You know, I think Dr. Treadwell is going to be in the you guys. And we were kind of surprised, but, okay. That’s great. And Dr. Treadwell came in and. She’s very tall, slight woman, and very, very matter of fact, but she just came in and she clapped her hands and said, well, you guys are going to have babies next week.

Alison and I laughed. And we said, no, she goes, yep. You’re going to have babies next week. We think next Tuesday, uh, we’re lining up schedules to make sure everything everybody’s schedule will work out. She goes, so go home, take a weekend. And. [00:22:00] Get yourself ready? Pack your, go back and make arrangements because next Tuesday, you’re having a baby or you’re having two minutes.

I think the Saturday or Sunday before we had a family dinner where we had our siblings come over and Astro came over and he prayed, pray for our family and what was about to happen. And wait, we just didn’t know. I will mention that the week prior. We did have a neonatologist appointment or console it’s comical.

Now towards the end of this council, the doctor looked at us and said, have you guys talked about pediatricians? Have you talked about how our seats. And Alison and I looked at each other and we just died laughing. And the doctor looked at us like, uh, are you guys okay? And we said, nobody has talked to us two weeks prior to when the girls are going to talk to us at that point about the possibility that we might be [00:23:00] bringing these girls home.

We thought we were going to go to the hospital and have a day or two together with them. Or however long we, we received. And that would be it, obviously we’re hoping for different than that. And then all of a sudden the medical professional sits down in front of you and says, you guys need to get a pediatrician.

You kidding who who’s going to be a pediatrician that can join twins

or June 11th, 2019. We got up real early, like parents stayed at our house so that they could be with Kennedy and Ellison was slated for the first C-section of the day. So we had to leave the house by five o’clock in the morning and go to the PACU. And we went through all the [00:24:00] typical pre-surgery C-section things.

And. Uh, Alison had her older sister with her, with us as well. So the plan was that once the girls were born and I was able, they were going to take the twins from the operating room right outside to what they called the nest stabilization and treatment area. And when I looked back through your pictures, I can see the timestamps.

I actually handed my phone to one of the anesthesia techs in the room that we’re standing behind us on monitoring Alison and her vitals. And I just said, I don’t want to watch, but if you wouldn’t mind taking pictures, I would love it. So we have thousands of pictures from that day. And if you look back at the timestamps, you can see for the coming out of Alison at 1106.

I did the same thing over in the nest. I handed my [00:25:00] phone to somebody working nearby and by 1115, the girls were stable and on the C-PAP breathing machine and just being monitored. So in a period of only nine minutes that I swear took two hours, but it was only nine minutes.

David Hirsch: How big were they when they were born?

Phil Irwin: They were a combined weight of nine pounds and six or eight ounces.

David Hirsch: Well, that’s a lot of baby. I mean, there’s two babies, but, uh,

Phil Irwin: big twins were being delivered at 34 weeks and they were very big, which was great. Gave them a lot of extra spray that they needed. So they were on a C-PAP leading up to surgery.

How I was dealing with things. Everything was an a or B situation. Let’s, let’s call it a was going to be the more positive situation [00:26:00] that the girls are born. They go to the nest and we get to go to the NICU or B the girls are born. We go to the nest and they have to go back to the operating room and all the technicians and the doctors leave.

And they give us our time with the trucks in my mind that that was the only two scenarios. Others there’s different scenarios off of each Amy’s situation, but I had to break it down into central cities where, you know, we get to go to the NIC deal or we get to go back to the operating room to share our time together.

It’s important for me to mention, like I say, we get to go to the NICU. Like, it was a good thing for us. It was. We can’t to go down to the NICU and boy is a different world down there because there’s parents down in the NICU that are suffering and, and here I am smiling like an idiot. It didn’t take me very long [00:27:00] to realize the somber tone of where we were, but for us it was a victory.

So we celebrate these small pictures, but we become aware of where we’re celebrating our victories. It might be really, really hard for somebody walking down the hallway to see very happy parents in the NICU when they’re their kids are, are CDH kid or have a heart abnormality or just got out of like, uh, a surgery or something, you know?

Um, like I said, it, it became very important for me to know when and where to celebrate these little small victories.

David Hirsch: That’s a point well taken.

Phil Irwin: I mean, I’m going to say it’s a world that fortunately, a lot of people don’t have to experience. And I’ll say the same thing about the, after the, uh, this is a big, fast forward, but after the girls were separated, our room became like a little [00:28:00] part of the celebrity room.

Like the surgeons would come in and check on the girls. But the nurses made mention of what you guys had your surgeons come in every day. We might not see them that often. And other cases, you know, all these people kept coming in and it was nothing but smiles following the separation surgery. And if you look out in the hallway and it is a different world where there’s parents separating and it’s hurting for our story, that’s very positive.

It’s great to celebrate your victories, but it’s also great to realize where you’re celebrating and how, how somebody else who might be hurting during that time.

David Hirsch: Yeah. Well, it’s amazing that you could have the awareness, right?

Phil Irwin: As opposed to just being totally focused on your own situation, to be able to almost take a step back and put your situation and the context right of what’s going on around you and. I don’t have a lot of experience, but we did [00:29:00] have a little experience when our second child was born. She was a part of a set of twins. The one didn’t make it. She was a preemie out eight weeks, premature, three pounds, nine ounces when she was born and she looked like a science fair project for the first couple of weeks of her life.

And you know, there’s a lot of uncertainty. That was my experience. And you realize that there’s some babies born today that are just a ponder too, and they’re just hanging on to life, right? They might’ve been born at 20 something weeks and that you could have that awareness is pretty amazing. And I’m, I don’t want to go back.

Too much, but, uh, you skipped over the like 15 months from the birth of the children. Thank you. And, uh, I was wondering, because you were prepared and knew about this, that first 24 hours is critical, right? Or are they going to make it a third of the babies, conjoined twins that are born, which is less than half, um, make [00:30:00] it to of her, um, you know, within the first 24 hours.

So it was there that sense of relief. No, we’re not just a 24 hours, but you know, we’ve got a little bit longer runway here. Things are looking up and maybe it’s not going to be as bad as you know, it might’ve been otherwise

for me, going through all of this, I always felt like if we made it past the first 0.4 hours, we were going to make it no matter what spirituality, our religion has helped us through this a lot.

Me, especially. I know it helped my wife too, but I can’t speak for her internal experience. I remember very vividly in two separate appointments. If they were longer appointments, it was a dark room. I spent a lot of those times, you know, staring at the staring at the monitor, but in prayer and there was one particular appointment where.

I just [00:31:00] got this wave came over me. That just kept saying over and over and you guys are going to be okay. You will be okay. And of course, I didn’t know what that meant. I didn’t know what all came out like, okay, you’re going to get through this. It’ll be hard. Or you guys are going to be okay. You’re going to have to car seats Sunday.

I don’t know what that meant, but I just had this way, but we are going to be okay. And I don’t know how much time later that a separate appointment I was spending that time in prayer. And I just had this vision of three Sandy blonde hair kids playing in the yard.

Tom Couch: And that concludes the first part of David Hirsch’s interview with Phil Erwin.

Listen back next week for the second and final installment of this interview in which Phil’s daughters are successfully separated from one another. That’s all on this Special Fathers Network, Dad to Dad podcast. The Special Fathers Network is a Dad to Dad mentoring program for fathers [00:32:00] 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 for. 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 bi-weekly zoom calls held on the first and third Tuesdays of every 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 [00:33:00] 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.