What to do when your world has been turned upside down

Thursday, July 12th

As a parent, you never want to see your kids get sick. Now imagine that you receive the news that both of your kids are really sick and are battling for their lives. How would you handle it?

Meet Mother of three, Christine Roehling. When her twin daughters were only 13 months old, she and her husband found out they BOTH needed heart transplants. She’s here to share their inspiring story and also to tell you how they’re giving back.

Click here to purchase tickets to the Heart 2 Heart Benefit (cocktail and fashion show) happening at The Corners of Brookfield on August 18th from 6:30pm – 9:30pm.

To donate or learn more about The Beat Goes On Foundation, click here.

Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

The information on the podcast is not intended or implied to be a substitute for professional medical advice. Diagnosis or treatment all content is for general information purposes only. I remember sitting in Khloe is hospital room and the holding her for the first time in about 72 hours to stroke patients need to lay flat in the dark hair pulls up a chair in front of me and it's never got to when the doctor pulls up a chair ever took. So she pulls up a chair in front I mean she says Christine Kendall has the same heart condition home. And at that point you are just in such a state of shocked that the only response that I had was. I need a pocket I just can't my response was I'm. I'm gonna throw up. That's Christine railing in a mother of three who found out that not one but both of her daughters need heart transplants. How did she get through this difficult time. And what are she and her husband doing T give back. Hear her story how you can health coming up in today's typecast. You're listening to the fifty shades of tape podcast with host Elisabeth tape a podcast designed to empower enlighten and entertain with perspective that most women are gang. But not always saying. This is fifty shades of K. Well everyone and welcome back from its fourth of July parade to we took a little to break your fifty shades of cave because I was out enjoying time with my family and hopefully. You were out enjoying time with your family and friends that every week the podcast is Carolina thank you to everyone that sharing with your friends who are subscribing only be reviews. We really appreciate it and die yet we hope to do more Soviet grant ideas or suggestions it always reaching an Elizabeth Kay radio. At gmail.com let me know what you wanna talk about. And that is what started today's podcast. Well a friend of mine sent me email and to you half to talk to this mom. She has been through a lot. And her name is Christine and she's with me today. To talk a little bit about her twins Khloe and Kendall thank you for joining me Kristy thanks for having me appreciate it so Kristina here has quite the situation happened with her identical twin daughters when they were born. About three years ago and she has an event coming up August 18 at the corners of Brookfield were gonna talk about it. Tell us Christine exactly what. Happened with your twin girls Khloe and candle. Echoing Tenet were born in 2015. Perfectly healthy little girls and being twins it was a surprise aspect. Welcomes yeah I felt so fast for about thirteen months or so and Khloe is playing her crib and we notice that she was moving the right side of her body. And Cliffs Notes version of this story is we took her into the emergency department at Children's Hospital where she was brushed back immediately. And discovered essentially that Khloe suffered from a stroke. How old she has since I was thirteen months old why now just turned has turned in one I've never even heard. He's someone that young having suffered Austro exactly in so I'm glad you stayed out because my husband an idea and kind of it was in the back of our mind who hears of TV's having strokes and I hate me this is more common than you think by. And it. With uncommon for sure they took her pack and diagnosed with a stroke on due to a blood clot that was in her right hip meet its way through her heart into the last side of her brain. Was caused complete right side paralysis. Facial paralysis had to atone no arm movement no way movement no feeling to pinching her responding to any sort of a stimulus cheesy now pays is that. So as part of the diagnostic process they did an echo cardiogram of her heart because they wanted to understand. How despite Clinton made its way through what tricks and Syria and they suspected it first that she had a hole in her heart that was undiagnosed. By. Unfortunately they didn't discover whole what they discovered is Khloe was in the advanced stages of heart failure. Her heart was so enlarged that. Valves weren't closing they weren't making met seal so this blood clot mean it's may right through the browns into her brain. On my gash she was diagnosed with the condition called restrictive Carty on my speed which is a very rare heart condition the way to describe it is. You know those stories of basketball players were perfectly healthy and then Dave Allison and got a cardiac arrest yet laps on yeah on the floor. That more than likely is carting them apathy your frying your frying your frying. Sudden cardiac arrest your heart and they had no way of really knowing him cracked and last. Either one you going to cardiac arrest or to you sometimes develops stroke Arab blood clots excuse yeah after the Kelly what happened with your doctor okay. There's five different types right now of Carney coming out but he. Let's say there's a hundred cases between children and and adults. Three to five of those cases are the type of car in the apathy mice my daughter had. So it's a very rare. Disagree we're faced with the decision of you knew right away that she was going to probably need a heart transplant they came to us they told us this and said listen there's no care. Charles knob here for their heart disease. The only option you have. Is one you can medicate and cannot do anything about it and obviously that has terminal outcomes or. We can do a heart transplant and this is just with one of the girls yup. That was with one end and now let's talk about your other daughter one or the other twin NASA at the time we didn't know that they were down a call or if they were identical and they don't know that great it was born while they do generally. Because everything is uniquely mammoth. My daughters on an in weakened. And going to those details later the identical twins generally either share a sack on when there in utero or placenta. One or the other or both my daughters had both supper sacks and supper a sentence so that made them think that they were fraternal. Okay cash it's also fascinating it just it's Urlacher and oh I bet yeah okay so they did it know all of that yeah identical so there's a chance that they could be identical but they were thinking that they were fraternal and you know so. Seven as happened with Chloe in the senate hold and she's got a twin we don't know what they're identical or not we won her past and and so within like a day. Of that diagnosis with Chloe based at OK we've got an appointment tomorrow morning at 8 AM at the first permanently completely and end. And let's bring Kendall and get her test and so dated didn't echo cardiogram of her heart as well and it turned out that Kendall had the same heart disease all my cash to. I had it all there's a happy ending to this story but. I have a fiasco I'm organized I I just I remember sitting in Khloe is broom. Her hospital room and the holding her for the first time in about 72 hours to stroke patients need to lay flat when times is the first time I got to hold her. And sitting there in the doctor pulls up a chair in front of me and it's never occurred when the doctor pulls up a chair ever took. So she pulls up a chair in front of me and she says Christine panel has the same condition home. And at that point you are just in such a state of shock that the only response that I had was. I need a pocket I just came on my response was angry and I just I. I am getting emotional. Listen I. Hope you feel about that. It's it was it was if you naming your body language telling this story can just see like this does to you physically. And you are you physically got sick again you lose it DN denying. Them. My husband is an incredibly strong person he. Is incredibly stoic as well so and when you meet him. Dated in his daily life he's a man of few words you know he's yeah personality and life and economic data is Iraq right here he's not outwardly expressive whereas pain you know all over the place. When it comes to his daughters I mean just seeing him. Be reduced down tied to adjust to his color of your world has completely. Shattered. And this is all this and a couple of days and did not have to have one now to within three days. And heart transplants. Are army any kind of organ transplant you you have to go on a list you have to wade but time is an always on your side but in this case. And this is where it's tough to talk about. The heart has to be relatively the same needs. So you have to get another. Bibi and another child's heart and they said that it is so so when you tune them when you lists for transplant as a whole bunch of different factors that go intent finding that match. And one of them is size. So close up thirteen months old right now days had her heart was so enlarged that. This guy is that they would be looking for was about the size of three girls. OK two to three years old because that cavity and hurt us was that large vacant T. Hart yeah okay. You were a mean of thinking a million thoughts obviously I mean did he eat your your world completely changed in the moment completely change yet in just a what did you do next though what do what. Did they say killed a channel list yeah. The next step actually after that was just said he notices a genetic defrocked. And so now we need to testy when Dan and all your son as you have Macs yet who's the oldest and out he's four. Seven Max stay right after Kendall all three of us spend guy an echo of our heart's blood testing genetic testing etc. fortunately I just remember this so vividly we got Max tested. And indeed it is that the news that Khloe music can't plan. Shortly after that Kendall music transplant and Dan in higher walking out of Arco room with maps in just. Just the most somber walk that you can ever imagine not talking to each other just like defeated. And I remember where almost not to return a blocked out of the from heart institute in hands tactic earring. Runs literally is running out of an office down the hallway waving his arms saying boxes OK I'll buy gas is OK. And I'll like in its. I just look back smiled into being Q. And and and laughed and mean. It's just incredibly. A fleeting defeating I think I lost like ten pounds in a week. And Matt as a die right in all. You're up against adding you're up against the clock care town so you how how did you. Decide dole you've both need the hearts. Who was still going to get a heart first one happened walked us through that process here because that part of my Christine is here is you know to talk about her story and what it's like to be. A mother and have a career and a wife and and everything you're going to but also. You have is Corrie foundation that you started to which can help other families and unfortunately may be in the situation. But how did they decide then what was next who was able to get a heart first of what was what was that like. We'll see you arrived at the hospital February 27 2016 and she denial leave the hospital until July 1 2016. So. We were given news after news blow to blow with Chloe. They basically told us she is now well enough to go home call Suze do you. Guys were living at Children's Hospital but yet you still have your life back at home to have what you do remember you reliant on family and friends are you from the Milwaukee area. Debt my husband and I I live emperor field so we're local very fortunate that are about 1520 minutes from the hospital. We do have family in the area. As well and we worked it out so. My husband stayed at the hospital during the week he works a job that. He needs to get to work early in the morning so it just made sense for him during the week to stay there. And I took the weekend shift. So during the week I had and Kendall and accept home with neem. Balancing our lives there. We kept their teens as normal as possible we didn't want especially next to feel like necessarily anything was really different right. Mean they're 21 into the seat how much can you get a CA really can't understand much of what's going on and all we would have him come to the hospital have her come a hospital visit and so he kind of would get this understanding and appreciation for why daddy's not only in the it's not he's going to visit and stay with Chloe Chloe says can clearly needs a new heart and you know those types of things so kind of introducing the topic to Jack yet trying to explain to him so he can understand and and then how quickly did they get their hearts. And you know the circumstances of what these these stories were with these with these donors Khloe got her heart may eleventh 2016. So I'll weeks after. And she was I'm put on the the transplant waiting list. We don't know anything about the donor. For Chloe. We've made that choice that we are not going to reach out to the donor and told our daughters are of age and can help make that decision. Themselves I applaud that that's that is really Smart app that makes a lot of sense this is their life story to the that we want them to understand and have that appreciation Horry and in respect cognitive ability. Ten Knoll. Thing impact that they have. And somebody else's life that the life that are living was actually given to them as against. And dean need ten live accordingly we need to have a life of gratitude in the immunity can stay in honor that whenever play. But understand what what went into balanced process yeah it would be really did and this is why. Organ donation is so all important we've done other. PSAs here with organizations that are involved organ donation and personal friend of ours has cystic fibrosis heated double lung transplant. By the university hospital. Saved his life it's so incredible that for people to really make the choice to donate and I feel like. Look if they it's my time it's my time and if someone can somehow benefit from. What I have left to give and definitely ticket because look look what we're talked about here because now. With your two daughters they have their heart transplants. You have started this organization. Lobbed the name by the way linked to beat goes on up. Beautiful name you know what is at organizational about. We started because I'm in 2016. Parlay as a coping can come honestly don't during this time yes so we're off and I got. Asked dynamite has been looked at me one Dini goes Christine. We can't just that he we need to get back. We have been incredibly blasts we both have fantastic jobs in and fortunately our employers were very flexible plastering the timing and we can talk about that earlier but. We've been blast from the respect of work. We are blessed because we have insurance. We are blessed because of XYZ factors all of the stuff that people are wanting to give to us. We appreciate. Where more and at the benefactors of that we need to give it to somebody that can do something with it and make a change eons. You know have a broader impact than just our family so he had this idea. He wanted to start a nonprofit organization he came up with the title and you know kind of did the background scene work of making it. Happens now they get out of this this man dad I'm getting so choked up here during this interview by the way sob sorry and I to directly access. Your husband Danny says amana are very few words don't look at what he's the Oakley he's done I mean. And for you guys have been at a time where Nolan would blame you all for just focus scene I'm you guys in almost been selfish for not and a bad way I'm. We're thinking about other people on how it. And mean and that you do realize how incredible that is there are so many news headlines out there of people do and some not great things in the world. This should be the news headline because that is really. Awesome what you're doing your stadium lights stinky in a week it's incredible to hear it's incredibly humbling in and it's also a hoping appreciate this too. It's also difficult to hear because it's not. It's not something that we're doing for recognition it's something that we're doing 'cause it has a personal impact on our family. But you recognize that you guys as stressed as you were there other stresses you'd have to worry about the Yunel. Many people right you have to worry about Jimmy Kimmel talked about that when his son went through and not the same situation and about a hard situation on the last. He's like I have the means to pay for that I can do this not. Many people do you will figure we'll figure our life RO we. Things work out I don't know if it had to suspend my life that's a spending and play figured as a woman who has two daughters in the heart transplant is saying that. Do you really seem to have this positive outlook and that had to be really important during this time perhaps too honestly was the teacher he aren't. Living in the hospital and there's so many families that have a harder than us are concerned and it's all perspective in. Stanley's have a more difficult bigger broad bigger bombs bigger mountains whenever you and Alan do you wanna put against it. You have to stay positive that's the common thread through all of these scam les is. You have to focus on mine and state the positive the hope you can't live in the moment you can't live with the diagnosis he can't live. Immediate yourself X number of hours or days or whenever you need to have kind of mall through and deal with your emotions but you need to get past you need to focus on it. Positive and Christine that's a really good Segway until a question badly wanted to ask you as a parent going through something like this. How did you call I know you talked about hours or days but what what did you do specifically did you have times where you would see your husband Dan. I need an hour and what did you do because our people is seen this that are going through. I'm not so great things right now whether it be in their relationships their job or their children like you said every everyone has their own storm they're trying to work through. What would you deal for us it was. Incredibly individual it was. He mom and dad can you come watch Max and Ing cannot I just need a minute suggests it'll go shopping or her you know. My nails dined that sounds to hold release selfish with respect to what's going on in your life but it's those moments of normalcy wanted to heal my house today half of in order to maintain a good mental state. Yes to not feel bad about that make people listening don't feel bad that self care is really want garnered us our Smart caring for yourself hockey care for the people Bakley in in that was probably the biggest lesson in in and guide eased for his cousin was. It was lacking. I'm on the capacity of finger. Going out it's going down and what role does play a lot going it's self care is incredibly important and I remember like I would spend 72 hours straight at the hospital over the weekend in that I mean I'd come home. Are you leave work. At the hospital from Friday to Sunday night. Street and I. Became friends with their weekend nurses and is that he must scientists believe this hospital I'm gonna go out and grab lunch or something do you want anything 'cause I can't be in these walls. Without leaving yeah for forty I gotta go do something so making sure of your focused on yourself and not feeling out of talked Ali aired today about mommy guilt we talked today about half that guilt that you feel because your daughter is an able toll. Did it almost make it's just somewhat easier that she was so young and indeed it really comprehend. Perhaps what she was missing out on it that make it harder not that's a really good question I think in some respects it did make it easier because they didn't she didn't have to have a whole lot of entertaining. He's still taking long naps specially since she's so sixties taking longer naps I wouldn't leave when she was a week. I've feeder lines and and she'd go down for her now it's okay I'm gonna sneak out early backing an hour now goes on all Dayne and in. The thing we have to remembers well is there are BBs at the hospital. To see their parents. Regardless of each it's because they work jobs that don't give them flexibility in. They live too far away and they can't come down. The don't have transport. It doesn't make sense for them because they live four hours a way to come down and now. You know Ronald McDonald house has books so they get nasty overnight or whatever it is. So the fact that I was bear. Indian was there as often in as much as we could be. Is phenomenal. And this is also a lot of really good time to to point out the special people that work at children's hospital and we work a lot with children's hospital and they are. The best they really care about their patients when you talk about these children that. There without their parents which you know bits only to parents would love to be different just can't because of circumstances. That's Wyatt the people that care for those kids. Are so crucial and the hospital is so important to the to help and support because of what they're doing in tapper for kids and sick kids that don't want to think about a sick child whom we get older and you're in 6080s. Okay you just expect this is just gonna happen but a child to be all plain and think about Christmas and birthday party going to the pool and all of that stopped the night. That's seen in hostile thinking about when am I gonna get a heart exactly exactly insult. These nurses went from and their focus on a nurse says because there at the bedside day in day out. They are the ones that are advocating for your child. On behalf of you when your not dare. They are the ones that are making sure your your kid knows entertained and I am number at the weekend Khloe got her heart happens being Mother's Day weekend. ER and how about that had our nurse Lindsay. She she is the week or nurse. Made an awesome Mother's Day gift for me with hand prints and think and all my bad. Cash for prince for her it is so that extra special hair that they. He thought about beyond rate when Lindsay was the nurse when Kendall was discharged as well and that morning she needs she's getting discharge she brought in a donut from cranky als because Kendall loves chocolate on giants and always attacks in that. Great in those little things they know your child that they know what works to know what doesn't. That's really beautiful and that's how they really was something that you needed because of major feel not so alone I would get in and it makes me feel. It made us feel good when we had to go back to work because unfortunately bills still come in so have to pay them right now I cut more bells are heads of medical insurer I have to keep my medical insurance to right so we had to go back to work in knowing that we had people we could trust during the day. That are worth our kids that were advocating for them that. And we've built relationships with. Dad had the best interest of my child. Act in mind put us at ease and it took a team I mean. Besides the doctors you see the nurses and senior employers manager extended family I mean her son Max he still. Needs his mom and dad he's worried about his baby sisters too and this foundation and the beat go resigning is raising money for other families in this situation and and and bringing awareness to how the organ donation for a while right so we focus our mission is to focus Aaron. Keep those that are impacted by heart disease and defects so we've really focused and things lake. Investing in impact for research that primarily Children's Hospital is doing with respects to. Or Indonesia and in making sure compatibility happens and what's the sustainable future. For Kim goes at duke received. Transplant specifically heart transplant so fun fact not really that fine. Create a cart. And donated heart. Average life of that car it's not a one and on the average length is twenty to 25 years. So think of this when my kid is supposed to be walking across the stage at their college graduation. They could also be thinking. I might reject my heart sometimes soon not like to deal. You're right it doesn't just and there are there's still steps that have to be made and things you have to think about it when you have to plan for a break so if you go just based on averages the average lifespan of a Behar let's say. In order to have a normal lifespan into their sixties and seventies. 25. Years on an harp on it donated heart. Dear gonna need two more heart its plants to more just to get into their sixties while India's. The research that's being done right now that we obviously have a I'm very. You know vested interest in naturally and yeah right I got what we wanna focus on from our our charities perspective is. Making sure that your research happens I and potentially growing organs from your own. DNA is so you don't have to worry about organ or tissue rejection because they're in credit at all. Children's Hospital at the forefront of leading that's incredible the aren't doing research with Chris accent. Understanding how organ rejection in tissue rejection works and batter ways have find out if a patient is going through tissue rejection vs putting them under. Going intervene in their knack earn artery Internet taking samples out of their heart. Didn't you know look under a microscope are there blood tasked. Diseases so it'll be fascinating so it's like this is why the beat goes on is so important because it's going to help fund research and things like distance. Hopefully save more lives and I was telling Christine earlier. I want to talk to you for hours and hours the we have a short studio time today unfortunately and I know that we have to get out of the studio which I feel bad that we have to. But before we wrap this up eleven event coming up on his team we are raising money for the beat goes on. Will call you can't be there they will be yes thought some of the event is really cool so do a really quick overview have held year. And are partnered with the corners of Brookfield and serious and silvers within the corners to do a summer cocktail parties slash fashion show. So this fashion shows going to be. Awesome because it's not just scenery typical runway models. We are featuring three heart Sam leans. In three heart can knows all of the day event every man's deeds with their support network that's great tell their story for giving them a platform to show that. They are awesome they are special they are unique their story is phenomenal and the beat goes on and the beat goes around. And I know what time is gonna happen 630 at 930 tickets are available on our website to be foundation dot com we're running. Ticket promotions so get a T shirt with your ticket sales from now until the sixteenth. Don't know when bill that we might we're gonna really get all of that 991 the next act colleges and nine and I wanna mix dot com you'll find information there. This is a really important foundation one that I know always gonna be doing amazing things and I mean your stories really really powerful and wealthier girls. As they get older they can tell their own story too so thank you for taking the time Christie to be here and for thinking of other people because you are saving lives. And I can't wait to meet your girls one day I can't wait to meet done. Which we're gonna put a picture up to a 991 the next act on their due when wealthy are the Eric. And I had about of organ rejection tissue rejection actually just before Memorial Day she landed in the icu for eight days and it was a pretty scary severe accused. Why she's bounced back Children's Hospital got her back on our feet got dressed Children's Hospital now back to normal was probably the second scariest moment of Ireland on my gosh that you're stronger because of it. Thank you Christine for sharing your story and thanks for being here being Tokyo. This is then the fifty shades of tape podcast with host Elisabeth Tate if you enjoyed this episode chair with a friend make sure to subscribe I'd stand and leave the revealed thanks for listening.