Still Waiting for a Heart

Christiana Whallon's daughter, Jaylee, was listed for a heart transplant due to being born with hypoplastic left heart syndrome and going into congestive heart failure. In this episode, Christiana shares with Anna what it was like watching her daughter's health decline to the point where she had to be listed for a heart, what preparing for the transplant process was like for her family, and how she has survived even though her daughter never received a heart transplant.

Transcript

spk_1:   0:06
Welcome to heart to heart With Anna. I am Anna Gorski and a host of this program. This is the fourth episode of Season 12 and our theme this season is organ donation and transplantation. Today's episode is called Still Waiting for a Heart. Cristiana Whelan is the mother of three to Heart Healthy Sense and Jay Lee, who was form with hypoplastic left heart syndrome and an intact atrial septum. She had the Norwood procedure at three days of age. She went into heart failure, which prevented her from being a candidate for the second open heart surgery. The bi directional Glenn Julie was listed for a heart transplant at three months of age, and sadly, she passed away at four months and nine days of age. Welcome to heart to heart with Anna Cristiana Thank

spk_2:   0:50
you so much for having me. I'm happy to be here.

spk_1:   0:52
I'm so happy to have you on the show so we can talk about Jay Lee.

spk_2:   0:56
It's always really helpful in healing for me to get to talk about her, so I'm looking forward to this

spk_1:   1:01
Wonderful. When did you start off by telling us about Julie's condition? Because not all of my listeners will know what hypoplastic left heart syndrome is. I

spk_2:   1:11
went in for a appointment when I was 24 weeks pregnant with Jay Lee. The OBE was doing hiss ultrasound. At the end of it. He looked at me with the worried look, and he told me that something was really wrong with J. Lee's heart. At that point, I didn't know the extent I had one of those out of body experiences where everything was spinning and I couldn't really taken. When he was saying Over time, we found out that she had hyper plastic left heart syndrome called a chilly just sometimes basically what that means that she was missing her left venture coal in her heart so she didn't have the left ventricle that imperative for survival. It's not one of those things that could have just grown back or corrected itself. Then we came to find out that she also had an intact atrial septum, which made things even more complicated. There could be some blood flow through the atrial septum that gives a little bit of wiggle room, I would say when a baby's born with a chili just but J lease was closed. It was intact. And so she needed a media intervention at birth. She nicked catherization. As soon as she was born, we didn't get to see her. Anything. They had to intubate her and do that Cath right away. And then she had her fault. Norwood, As you said, she had her Norwood at three days old.

spk_1:   2:21
So did their starter on prostaglandin as soon as she was born to help try and keep the P. D. A Open.

spk_2:   2:27
No, I don't think so. It's crazy. It was a C section and they had me. Wow. They didn't even deliver her in the O B area. It was in the surgical area. So they had three operating rooms, one for me and then one set up in case she needed open heart surgery right away. And then another team set up for the calf. Wow. Yeah. And so they took her. I asked if I could see her and they assigned. I'm sorry. We gotta take her right

spk_1:   2:50
away. Oh,

spk_2:   2:52
I don't even know how much she weighed at birth because they weren't able to weigh her before they put all the equipment in.

spk_1:   2:58
It's surprising that you said you couldn't even have her. Wait, Because I just did an interview with somebody else earlier today and she said the same thing happened to her.

spk_3:   3:08
Wow. Yes.

spk_2:   3:09
Oh, I've never heard of that before.

spk_1:   3:10
It's very unusual. Right time. Even if you're baby is born with a heart problem, they still have enough time to go ahead and weigh them and can at least show you the baby. But, wow, Isn't it surprising that it happened that way? Was this your first baby? No. So we actually have an

spk_2:   3:29
older son. He was two when Jay Lee was born. They're both June Birthdays. She's our second.

spk_1:   3:34
Okay. Okay, So you had experienced childbirth. You knew what was supposed to happen. But this was your first child with a heart defect, and so probably a lot of that was unknown to you.

spk_2:   3:46
Yes, exactly. It it was totally unknown grounds. And just not what you expect. You know, you should think about motherhood, anything about pregnancy and all those little things. It was definitely not at all like what we were expecting from the moment we got her diagnosis.

spk_1:   4:01
Absolutely. And so for those listeners who may not understand the importance of the left ventricle. It's the left ventricle in your heart that pumps the blood to the whole body. So if that's part of the heart is hype of plastic, which means too small or non existent, then you have really trouble because the heart will not be able to pump blood to the whole body. And, of course, we know that brain especially needs that blood needs the oxygen that that blood provides, or else you're have catastrophic problems. And that's why they had to rush her away so quickly what they'll do in that procedure immediately before they can even do the Norwood procedure is put a little hole between the atria. That's what they were saying. She has an intact atrial septum. What that means is wth e septum, which is the piece of material that separates the two Atria. There was not a hole, which means there was no way for oxygenated blood to get to her body. Yeah, and so that's what's so scary. She wouldn't have been able to get enough oxygen as soon as Mommy wasn't doing it for her. And so it's just a critical thing. That's why every baby is born with what's called a P D A or paint doctor Sartorius ISS. That's a teeny tiny hole that allows for some oxygenated blood to cross over. And I usually closes within the 1st 10 days off life. There's a drug that they have called prostaglandin. If that drug is administered right away, it can help keep that open so it doesn't close too quickly until they can get into the operating theatre. So wow, talk about an emergency procedure and talk about being scared.

spk_2:   5:43
Yeah, they're terrifying

spk_1:   5:44
eso. Did she ever get a chance to leave the hospital?

spk_2:   5:48
Yes. So we were able to bring her home three different times anywhere from two days toe. I think of a seven day she was home the longest, but that was even really difficult to have her home because she was on oxygen and she had a G tube, and we just felt so anxious all the time, trying to basically keep her live at home. And so each time it became really obvious that she needed to be back in the hospital. So we go back to the e. R and get re admitted, and I think we always felt a little bit relieved when we were re admitted because we didn't feel like she should be at home. She just was never stable enough to really thrive at home.

spk_1:   6:26
Having had a baby with hypoplastic left heart syndrome myself. I know that What scared me, Waas I was not a nurse or a doctor, and I was so afraid something would happen because I was ignorant of what could happen or what some of the warning signs were. And so I can imagine you must have been terrified.

spk_2:   6:48
Yeah. Yeah, exactly.

spk_1:   6:50
So I assumed that neither you nor your husband have medical training either.

spk_2:   6:55
No, no. I mean, she didn't come home until she was about a month old for the first time. So by then, we were very involved in her care and, you know, knew how to use the G two. Knew howto to do all of those things. But no, we did not have any type of medical background.

spk_1:   7:09
And so for those listeners who don't know what a GT abyss, a G tube is a feeding too. That is put inside the baby because the baby, in this case, probably lacked the energy to be able to eat enough to keep her alive. It's very complicated. There's so much going on that I can understand. You would feel more comfortable with her being in the hospital where she had round the clock care.

spk_2:   7:31
Yes, yes, We're also very thankful to have that time home with her. You know, it's time will treasure forever. And we're able to take her on a couple walks. And, um, you know, she had that time with her brother at home. So, um, you know, we're very thankful for that as well. And of course, you want your child home and not hospital, but you also want them to be where they're safest for her. We felt like that was the hospital

spk_4:   7:56
takes his heart into street. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy. My father promised me a golden dressed world held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor.

spk_5:   8:17
Heart to heart With Michael, please join us every Thursday at noon, Eastern as we talk with people from around the world who have experienced those most difficult moments.

spk_3:   8:26
I am with origami L jewelry and we personalized lockets. It has helped me heal so much by having that locket. I've had other friends and customers who have created lockets. They'd love their lockets, and they gift lockets to people who are bereaved or they're celebrating somebody to get your own origami. Our luck it contact Nancy Jensen on Facebook or her website Dancey dancey made dot origami owl dot com.

spk_0:   8:58
You are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart, to heart with them.

spk_1:   9:17
Cristian In the first segment, we were talking about Julie's hospitalization. What did the doctors tell you about transplantation? Was transplantation her only option?

spk_2:   9:27
So my husband and I were prepared for the three stages of surgery, which would be the Norwood and then the Glen and then the Fontanne, and we had just always assumed thoughts, the process she would go through, and we hadn't even really thought too much about transplant. I think when we had asked the surgical team during my pregnancy, if that was an option, they had told us that that would be more of a last resort and not something that they typically choose to dio. And so we just hadn't really research that option or thought about it. And so J. Lee had her Norwood, and then the heart failure really never improved. She continued to just be in really poor health. The doctors did a couple of different catheterizations that ended up showing things still looked really bad in her heart. After one of those catheterizations, the surgical team, told us that they did not feel she was a candidate for the Glen surgery, which was just I mean, it shook our world up because that's just what we assumed was gonna happen next. That's what we're preparing for. And so they hear that, Yes, it definitely shook us up, and I'm took us off guard. But then I think we're the type of people that once they told us what they wanted to do, that they wanted to do a transplant. We just kind of dove into that. The transplant process just to get on the transplant list is a process. It was about a 6 to 8 day process of interviews and meeting with different members. Doctor, Psychologist. Everyone wants to make sure that if they give this baby the precious gift of a donor heart that we were gonna be able to take care of her and that basically that she deserved this heart and we had to go kind of prove that the team And then the team went before this committee and they ultimately decided to list her. They listed her with the highest priority. She was a status one A which meant if there was other babies or people her size that were generally more healthy, she would get a heart first. And so I think we had a lot of hope and not that Sure, she was high priority, and it was likely she was gonna get a heart.

spk_1:   11:23
Wow, I had no idea it was such an ordeal. I mean, I knew that there were some interviews which you make it sound really scary that you have to go through and to prove that she is a worthy recipient of this heart attack. Well, even 6 to 8 days, when you're in the hospital and you're sleep deprived, you're stressed to the max. You're wondering how you're going to manage all of this and still take care of your heart, Healthy said. And I'm sure one or both of you were also working where both you and your husband working.

spk_2:   11:54
My husband was working. Thankfully, we had a lot of family support. So one of us, between my husband and myself and our family, one of us was always with Jay Lee. What very thankful for, Yeah,

spk_1:   12:05
that's wonderful that you had that kind of support. So tell me what you would tell another family who is in the same situation you were in, and their baby is waiting for a heart.

spk_2:   12:17
You know, that's a really tough one. It's a really tough one, I think, as a culture as a society, our first instinct is to tell someone, Oh, just be positive or just pray really hard. It'll happen. But as we know, that's not always the case. I think that for us, looking back, hearing that we're like Okay, So what did we do wrong? Did we not stay positive enough? Do we not pray hard enough? But I think the reality is is that there's not a lot of donor heart's available, and so there's a chance your baby might not get a heart. And I think it's good to be hopeful. It's good to be optimistic, but also to live with that reality and the savor each moment with their child and to not take that time for granted that time waiting for a heart. I was talking to my husband last night when we were saying, You know, we were looking ahead to how we were going to care for J. Lee once she got the heart. We do feel like we really treasure that time with her, but the reality is there may never be a heart. And so I think, as a family, you have to prepare for that. I know that's not a positive, fluffy thing to say, but it's our reality, and that's really all I can share with you,

spk_1:   13:31
all right, and that's why I wanted you on the program today, even though we didn't have the fairy tale happy ending that we wish you would have had. I think you have a valuable story to share. I think J. Lee's life meant something. She was valuable, and we can learn from J. Lee. Yeah, she may not have been able to grow up and play with her brothers, but she's still part of your family. She's still were. Absolutely. Yeah,

spk_2:   13:57
yeah, absolutely. Thank you.

spk_1:   13:59
Well, what was the most valuable lesson you learned from Jay Lee? We learned

spk_2:   14:03
a lot of things, I think, through J. Lee and threw her journey. She taught me she taught me a lot. She taught me strength. Here is this precious newborn baby girl who's getting poked and prodded, and she still was smiling. I don't remember, you know, eight weeks older, whenever baby start smiling there she was smiling at us through all of us. And I think I look back on that and I think you know, if she if she could fight and smile and do it, I could do it. You know, I can carry on without her, and I will carry on without her for our family. And so she taught us that she taught us love and how to love and as a parent howto love our Children fully through the hard times and to realize that each moment is a gift. And so I think her five taught me not to take a moment for granted and just to stay over that time with our other Children and to savor the memories we have of her and then with our faith. I think, you know, after going through such a trauma, it definitely shakes your faith, and not that we walked away from our faith. I think it's a journey. It's definitely journey, but I definitely have more of an eternal perspective than I ever had before. As a Christian, I always was thankful for Jesus of sacrifice on the cross and thankful for heaven. But I never I never was so thankful as I am now, knowing that we'll get to be with Haley again. And even if we're on this earth for another 50 or 60 years and we're grieving her during that time, that's nothing. Thio the time we have with her in heaven for eternity and so I definitely think about my faith a lot more now.

spk_1:   15:47
Wow, I don't think you can experience something like this without having some kind of crisis of faith. But it sounds like you've come out stronger on the end.

spk_2:   15:56
Yeah, yeah, I think it's It's definitely a journey, and each day is different. But I couldn't have walked this journey without it for sure.

spk_1:   16:04
Well, and it sounds like you had so much love and support from your family that maybe yeah, this also brought your family closer together.

spk_2:   16:12
Yeah, absolutely. I think you're right.

spk_1:   16:15
It sounds like you've had an amazing experience that could have been devastating and destroyed you. And instead it's lifted you up.

spk_2:   16:25
Yeah, I think so. I think it's definitely just makes you cherish the things that matter

spk_3:   16:37
tonight forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes amazon dot com Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects. Enjoy the music home tonight forever,

spk_5:   17:12
Anna Dworsky has written several books to empower the congenital heart defect, or CHD community. These books could be found at amazon dot com or at our website www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books, My Brother Needs an Operation, the Heart of a Father and Hypoplastic Left Heart Syndrome. A Handbook for Parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more

spk_6:   17:54
Heart to Heart with Anna is a presentation of hearts, Unite the Globe and is part of the hug Podcast Network Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift and power and enrich the lives of our community members. If you would like access to free Resource, is pretending to the C H T community. Please visit our website at www congenital heart defects dot com for information about CH D, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more

spk_1:   18:28
Cristiana before the show. You told me that you've adopted a little boy. What was the deciding factor in choosing adoption to expand your family? I think I've

spk_2:   18:37
always wanted to adopt as far back as I could remember. It was something I wanted to d'oh. So for me, it wasn't a Plan B. It was plan A. And after my husband and I got married, it was something he was open to us. Well, I don't Yeah, yeah. So I'm super thankful for that. We had Children biologically first, and And then after J. Lee passed, I think it just became clear to us that it was what God had next for our family again. It wasn't a plan B. It was like, Okay, this is clean, eh? This is where God has us right now. We always have wanted our Children close in age. So J. Lee and our oldest Ezekiel were two years apart, which we were, you know, so excited for we wanted and half siblings close in age, so he didn't want to wait a whole lot of time to have another child. I was still healing from the C section, and there's just a lot of factors that made it clear to us that okay, now is the time to adopt. We fought a lot of peace about it, and so we knew it was time to move forward. And we didn't wait very long to start the adoption process After J. Lee passed, we waited a few months, prayed about it, focused on our grief. And then we really felt now is the time to move forward. And as soon as we got going with the process, it was just really clear that we had made the right decision.

spk_1:   19:55
It almost feels like this was a sign from God.

spk_2:   19:59
You don't want to lose a child toe, have God's plan made clear to you like I would never choose to lose a child. But I am thankful through the heartache and the trauma we walk through that he was gracious to allow us to have another child. And so we're you know, we're so thankful for that. We're thankful for the gift of adoption.

spk_1:   20:18
Yeah. Oh, I just love the way you said that. Because it is a gift. You're really is it? Well, tell us about your adopted son. My little guy's eight months

spk_2:   20:26
old already, and he is just use a joy. He is such a sweet, little mellow personality, and he was just smiling all the time. And he and his big brother are already best friends. It's just it's so beautiful for us to watch them together, tow, watch them become best friends as our baby's getting older. It's just really fun to see our boys playing together and lighting up when they see each other. Our oldest Ezekiel won't go to bed without snuggling with his baby brother. And so, yeah, we're just We're so thankful for that. So

spk_1:   21:06
you're taking a 1,000,000 pictures, Cristian.

spk_2:   21:08
Yes, we're trying to take a 1,000,000 pictures. Yes, for sure there's never enough pictures were just which Highness savour it. And the time is flying by and so different having a healthy child. And you just appreciate each milestone and each state, we're just so grateful and so grateful to have our boys that have that time with, um

spk_1:   21:32
Well, it sounds like your family is remarkably close knit, So I'm wondering how you're going to tell your new baby about Jay Lee.

spk_2:   21:45
We talk about Jay Lee every day. Ezekiel has our oldest son has a really good memory. So even though he was two when Jay Lee was in the hospital, he remembers a lot of things. He remembers going and playing in the playroom and being with this sister listeningto Lulla vies with the sister, so he still talks about daily every day.

spk_1:   22:07
And it sounds like they're good memories.

spk_2:   22:09
Yes, so I think it's just a natural thing that our youngest is just gonna grow up learning all about us. That's the you know, we do spend time at her grave site talking about her and thinking about her. She's never far from our mind. We love saying her name. We love talking about er, still a daily part of our life and of our conversations.

spk_1:   22:30
So do you have any special traditions? It's so early yet, but our Have you thought about any special traditions that you want tohave? That would include J. Lee. We had a

spk_2:   22:42
Facebook page where I would post all her medical update during her fight during her journey, and we continue to use that paged thio kind of process through our grief and share memories of jail and share pictures of her. And so that's really, really a hopeful thing for us. It's on Facebook, the pages J. Lee's Journey of Hope. So it's just always such a blessing for us. Tow. Have that that place to talk about her and a share. Okay, now I'm just rambling.

spk_1:   23:11
No, no, it's okay. You know what? I think that unfortunately, in American culture and maybe it's different in other countries that really hope it is. It's almost taboo to talk about losing a child. People shy away from that, and I think that's such a pity, because it doesn't give you the time to process your grief. I mean, no, this is something you are going to live with for the rest of your life, but since you're a Christian, you have the faith and a belief that you'll be reunited with her again. And while that's comforting, and I'm glad that you have that it doesn't take away from effect that you miss her every day.

spk_2:   23:52
Exactly. So yes, and our minds, our family is an eternal family. She's always a part of our family. And so when people don't talk about her or acts like she's a taboo topic, it's hurtful. Just like she would be if you didn't talk about someone's child who's still living

spk_1:   24:09
Brian.

spk_2:   24:10
So we tried to bring her up as often as possible. And I guess her Facebook page is kind of a place where, even when I feel like people aren't acknowledging her or people have forgotten her, I can still talk about her and everyone has

spk_1:   24:22
in the less than, well, exactly. You know what? And for me, processing, having a child with hypoplastic left heart syndrome was extremely difficult. I had just like you. I had a son who was heart healthy. I didn't expect anything to go wrong with my second pregnancy because my first pregnancy was normal and I didn't find out in utero. I didn't find out until after my son was already born, and it was so hard for me to process it that I ended up turning to writing. And I know that you're a writer to do you find that the writing is therapeutic for you?

spk_2:   24:56
Oh, absolutely, absolutely. It's so therapeutic for me. I think sometimes I go through stages where I just can't right, because I don't I don't know what to write anymore. In those times where I could really release and let it out. It is such a breakthrough in the grieving process.

spk_1:   25:13
Yes, that's the perfect word release. I just lost my mom. Oh, crash investor Craig. I just lost my mom in February 2018 and it's still very fresh. We're recording this show, and it's been less than three months, in addition to writing about it and the writing, helping me to process what I'm going through and not having my mother anymore. But like you, I'm Christian, and I know I'll be reunited with my mother again someday. But I just did a program with heart to heart with Michael and I helped write the script for the show, which was therapeutic, and I wrote out all my answers ahead of time so I could process how I would talk about her to honor her, Yeah, to make her memory something valuable to others as well. And that was therapeutic for me. So I think it's good that you have that Facebook page and you have people there who probably have been with you on your journey from day one.

spk_2:   26:08
Absolutely. Yeah, I like how you said that it is a way to honor the people we've lost to write about them and to carry on their memory because there's nothing worse than losing a family member. But then to feel like they're memories being for gotten, that just increases the pain.

spk_1:   26:27
Yep, we can't let that happen. No, we definitely can't. We definitely can't. As long as we keep remembering them, they're still alive. In some ways, you know, there's so alive within us, and I think that's what we have to cherish, what we have to hold on to. Thank you so much for coming on the program with me today, Cristiana. I really enjoyed visiting with you.

spk_2:   26:48
You two. Thank you so much for having me. I really appreciate it. It's been really nice talking to you.

spk_1:   26:53
Well, I enjoyed it myself. Even if we did share a few tears, That's okay. Yes, yes, can share tears. That's that's part of the therapy to

spk_2:   27:02
yes, absolutely. It's definitely healthy and much needed. Sometimes,

spk_1:   27:06
Yes, well, that concludes this episode of Hart to Hart within, and thanks for listening. Today, friends find us on iTunes and subscribe. And remember, my friends, you are not

spk_0:   27:19
thank you again for joining us this week way Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community. Heart to heart with Anna With your hose down, Jaworski can be heard every Tuesday at 12 noon eastern time.