Heart to Heart with Anna

Congenital Heart Defects in a Family

June 30, 2020 Daphne Davis-Patrick Season 15 Episode 274
Heart to Heart with Anna
Congenital Heart Defects in a Family
Show Notes Transcript

Daphne Davis-Patrick is a mother, a grandmother, a nurse, and an author. She joins Anna in this episode of "Heart to Heart with Anna" to share her cardiac journeys as multiple members of her family have had to deal with living with congenital heart defects. Along this journey, Daphne's family discovered a hereditary defect that has affected two of her granddaughters and her son-in-law. The loss of her son, Joval, and the discovery of her family's other congenital heart defects led Daphne to write a book to help other families have hope and never give up.

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Daphne Davis-Patrick :

There's so much advancement in treatment for the kids. And because of that less parents will go home with empty arms having left their deceased children in the hospital.

Anna Jaworski :

Welcome to "Heart to Heart with Anna." I am Anna Jaworski, and the Host of your program. Today's show is 'Congenital Heart Defects in a Family' and our guest is Daphne Davis-Patrick. We'll start today's program by learning a bit about Daphne and her immediate family in Segment One. In the second segment, we'll talk about her experience with her granddaughters and in the final segment, we will get some advice from Daphne for other families dealing with multiple family members who have been born with congenital heart defects. In 1992, Daphne Davis-Patrick experienced joy at the birth of son, Jovel. She also experienced the emotional pain of a cardiac diagnosis with a poor prognosis. Nine months later, definitely held Jovel in her arms as he took his last breath. Twenty-five years later, in 2017, Daphne held her two-year-old granddaughter Jolie in her arms when she fainted. That was the beginning of Jolie's cardiac journey. Two years later, in 2019. a genetic test revealed that Jolie's sister also had the same defective cardiac gene as Jolie. Despite living with one cardiac diagnosis after another, Daphne believes there can be joy and hope in the midst of a cardiac journey. Welcome to "Heart to Heart with Anna," Daphne.

Daphne Davis-Patrick :

Thank you very much, Anna. I feel very honored to be a guest with you today.

Anna Jaworski :

Oh, I am so honored to have you on the program. It's lovely to talk to another grandmother. A lot of my Listeners know I am the grandmother to Rowan Marie, who is one year old. She's my first granddaughter and I'm so excited anytime I talk to other grandparents now. It's always a delight. You told us in your bio that in 1992, your son was born with a congenital heart defect. When did you discover that Jovel had a heart defect?

Daphne Davis-Patrick :

Okay, at birth Jovel was a normal child, I had the almost normal pregnancy with little hiccups, but as a newborn, I just knew that something was different about him. He was our second child and he seemed totally different. His sleeping pattern during the night was very erratic. He always seemed hungry, and when I fed him, he cried constantly instead of drinking. He also seemed to have a chest infection because I often heard him wheezing and around his eyes was dark. We took him for medical attention at 8 days old. The doctor prescribed eyedrops and cough medication but he did not get better. Follow-up with the doctor indicated that he had a heart murmur. A chest X-ray showed that Jovel's heart was enlarged and we were referred to a pediatric cardiologist, and then our journey began.

Anna Jaworski :

So I imagine after the pediatrician told you you needed to see a pediatric cardiologist, you had to go to a specialty clinic, is that right?

Daphne Davis-Patrick :

Yes, we went to the pediatric cardiologist's office and she did some testing.

Anna Jaworski :

So what did she tell you Jovel had?

Daphne Davis-Patrick :

Okay, so she did some diagnostic tests, which indicated that Jovel had truncus arteriosus. This is a rare congenital defect in which there is a single blood vessel that lead out of the heart. Usually there are two of those blood vessels, but he had one and because of that structural defect, he had breathing problems, meaning that his breathing was very fast. When you look at him, we can see his chest rising and falling very, very quickly, which is different.

Anna Jaworski :

Yeah

Daphne Davis-Patrick :

He had poor feeding habits. And he also had a chronic wet cough.

Anna Jaworski :

That's scary.

Daphne Davis-Patrick :

Yes. And in addition to that truncus diagnosis, he also had an atrial septal defect and a ventricular septal defect. At that time when the pediatric cardiologist saw him, he was six-weeks old and he was already in heart failure. We were told that he needed open-heart surgery as soon as possible, or he will die by the age of three months.

Anna Jaworski :

Wow.

Daphne Davis-Patrick :

At that time, we were living in Trinidad and Tobago, and surgery to repair truncus was not done in our country. It was available in the United States or England. And the cost for that surgery was over 25,000 Trinidad dollars. That did not include the cost of travel and accommodation. Wow. Yes.

Anna Jaworski :

Now did you have insurance that would cover that?

Daphne Davis-Patrick :

No, we did not have insurance. I was in nursing school and my husband was working at the school. He was a lab assistant so our income was not much.

Anna Jaworski :

Right...

Daphne Davis-Patrick :

Right. So we did try to... our friends and family and church members tried to raise some money for us. But of course, time was ticking; we did not have enough time to raise the money. So we were able to travel to Venezuela for some additional testing. And that testing show that he did have truncus arteriosus type one. He also had atrial septal and ventricle defect. And he also had severe disease in the left lung, because of the amount of blood that was flowing to the lungs.

Anna Jaworski :

Right. So the lung was congested.

Daphne Davis-Patrick :

It was

Anna Jaworski :

Oh, my goodness. So they didn't do that surgery in Venezuela, though. Did they?

Daphne Davis-Patrick :

No, it was just additional testing to see for sure to confirm the doctor's diagnosis

Anna Jaworski :

Sure. It's always good to get a second opinion.

Daphne Davis-Patrick :

Yes

Anna Jaworski :

So what were you able to do from there?

Daphne Davis-Patrick :

Well, the report stated that the prognosis was very poor, and surgical possibilities were limited. He was a poor surgical candidate. And if any surgeon puts him in the operating room, he will die on the surgical table.

Anna Jaworski :

Oh, Daphne! I'm so sorry. That... that had to be such a difficult thing to hear.

Daphne Davis-Patrick :

It was.

Anna Jaworski :

And it was 1992. We didn't have the internet back then like we do now,

Daphne Davis-Patrick :

No.

Anna Jaworski :

We didn't hear about GoFundMe or different programs that you could apply to to see if you could get some help.

Daphne Davis-Patrick :

Right. So the local hospital did have charitable organization that helped fund the cost for surgery, but it was for selected children who had potential for a good recovery. So he was denied help because of his poor prognosis.

Anna Jaworski :

Sure, he was a congestive heart failure. His lungs were congested, just even the flight to the United States could have been so traumatic for him that he may not have survived the flight.

Daphne Davis-Patrick :

Yes.

Anna Jaworski :

So what did you do?

Daphne Davis-Patrick :

We just live the best life that we could have. We knew we had a poor prognosis. We had high faith that God will take us through the journey, because there was nothing that we could physically do. We tried to raise funds; it was not enough. And even if we did raise that amount of money, he was a very poor surgical candidate. So we loved him to the best of our ability, and did all family activities as we would normally do.

Anna Jaworski :

Because you had another child. So you had a child who was excited to have a brother.

Daphne Davis-Patrick :

Yes, definitely. Jewel, our daughter, was four years old during that time, and she was just so excited about her baby brother. She had always asked us to 'make a baby for me to play with' so she got a wish, but it was taken away after a short period. of time,

Anna Jaworski :

But I'm surprised because in the bio, you said that Jovel lived until nine months and they told you in a hospital that he would die by three months.

Daphne Davis-Patrick :

Yes. The doctor when she gave us that diagnosis, she said three months. But he lived to be nine months and eight days.

Anna Jaworski :

Wow. Wow. So what happened in the end? Can you share with us what his last days were like?

Daphne Davis-Patrick :

Sure I can. So Jovel was born in March. On Friday, December 11, at 8 p.m. he fainted for a few minutes and almost stopped breathing. So my husband Andy, Jewel (our four-year-old daughter) and I, we prayed and he woke up and we got an extra 22 hours just so that we can have closure. The very next day we went to our pastor and another family from the church, told them what happened. Jovel had a great day and was his usual cheerful smiling self. Within 15 minutes of our arrival back home to the house, Jovel heart stopped for the last time. He passed out in my arms. I placed him on the kitchen table, gave him chest compressions, even though I knew that this was going to happen, I still could not just stand and look at my son without trying to do something.

Anna Jaworski :

Sure.

Daphne Davis-Patrick :

Right. So I gave him chest compression, but that was to no avail. And he breathed his last breath on Saturday, December 12, at 5:50pm, nine months and eight days after he was born. God gave me a sense of peace, while I closely held him in my arms for the last time as the warmth of life left his body.

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"Texas Heart Institute were offering us a mechanical heart, and he said, "No, Dad, I've had enough. Give it to someone who's worthy." "My father promised me a golden dress to wear. He held my hand and asked me where I wanted to go." "Whatever strife or conflict that we experienced in our long career together was always healed by humor." "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.

Anna Jaworski :

This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe but of the Hosts and Guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Rejoiner :

You are listening to "Heart to Heart with Anna." If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@hearttoheartwithanna.com. That's Anna@hearttoheartwithAnna.com. Now, back to "Heart to Heart with Anna"

Anna Jaworski :

Daphne, let's start this segment by talking about your other family members. You said you had two granddaughters with a genetic congenital heart defect But I'm curious before we talk about your granddaughters were you concerned about your daughter that maybe something would be wrong with her, too? Did you ever have her tested?

Daphne Davis-Patrick :

No. Jewel had no problems during her childhood or even adult until during pregnancy. And during her pregnancy, she's a mother of two she has Jude who is seven and Joelle, who is for almost five during both pregnancies. She developed atrial fibrillation, but it resolved after the pregnancy. So beside that she had no other problems.

Anna Jaworski :

Okay, that's a blessing.

Daphne Davis-Patrick :

Yes, definitely.

Anna Jaworski :

I'm so glad they resolved after she was finished with the pregnancy. So because the mother had some heart issues did they check out the baby right away during the pregnancy? They Check him out. They did a lot of ultrasound of the baby's heart in utero to see if he had any problems and he did not have any problem at all. Okay, okay. And then when the baby was born, did they check him out again? Just in case? Yes, they did. And that baby's perfect. No problem. He's seven years old. No problem at all. Okay, and then she got pregnant again. Yes, she started having arrhythmias during that pregnancy too. But they resolved after she had the baby.

Daphne Davis-Patrick :

Yes, they did and no problems.

Anna Jaworski :

Okay, but this baby did they check this baby out as well in utero.

Daphne Davis-Patrick :

So this time the two girls that have the genetic cardiac problem belongs to my daughter who was born after Jovel died. So that's Jahdiel. Jahdiel was born in '94, approximately two years after Jovel died. Because of our experience, we got her checked out very early on it showed that she had a hole in the heart but the doctor said that it would close up after a few weeks. So of course that was devastating. Jahdiel's name means 'God give joy.' So I was like, "God, where is the joy that you promised me? I don't want to have two children with cardiac problems knowing the problem that happened with Jovel."

Anna Jaworski :

Right.

Daphne Davis-Patrick :

Yes. But she got better.

Anna Jaworski :

Good, good! My granddaughter also had a heart murmur. And they said that she had a hole in her heart. So of course, we were a little bit panicked as well, and it has already resolved. So did this baby's heart problem also resolve?

Daphne Davis-Patrick :

It did after a few weeks that problem resolved and she had no problems at all.

Anna Jaworski :

Good

Daphne Davis-Patrick :

Yes.

Anna Jaworski :

So she lived up to her name?

Daphne Davis-Patrick :

She lived up to up to her name. Yes.

Anna Jaworski :

Okay, but then you had another granddaughter.

Daphne Davis-Patrick :

Right, so Jahdiel, (who is had) who had diagnosis with a hole in her heart, she grew up and she's married and has two daughters. So those are my granddaughters. Jolie, who is five, and Trinity is three. They have that gene that's responsible for sodium exchange in the heart; that gene has a variation on it.

Anna Jaworski :

So they were born with arrhythmias then?

Daphne Davis-Patrick :

They were born perfectly. They were born healthy, no problems until Jolie was two years and five months.

Anna Jaworski :

Okay. And then you were holding her in your arms and all of a sudden she passed out.

Daphne Davis-Patrick :

Yes, in August 2017 we went on a family trip, which we usually do. And Jolie was two years and seven months. I had her in my arms and she just fainted away. I just had an uncanny feeling that something was wrong. She awoke looked good, felt good, no problem. But we did take her to her doctor to get checked out. And when she was doing an ECG, it showed that she was having an abnormal heart rhythm that needed immediate intervention.

Anna Jaworski :

Right. Right. Wow. So that must have been scary. Were you went to your daughter when she was having this appointment?

Daphne Davis-Patrick :

My eldest daughter Jewel was there with her. And they text me and I reached them immediately. So I was there throughout all of the interventions that they had to do to get the heart to try to restore its normal rhythm.

Anna Jaworski :

So did they do an ablation on her or did they just give her medication?

Daphne Davis-Patrick :

They did numerous ablation, they did cardio conversion. They did quite a lot of procedures on my little two-and-a-half year old.

Anna Jaworski :

Poor baby! Wow. Wow. That's lot for a little girl to go through. And it's a lot for Mom and Auntie and Grandma to go through, too.

Daphne Davis-Patrick :

Yes it is.

Anna Jaworski :

So they decided to test her sister?

Daphne Davis-Patrick :

Yes. So when they did all the different testing and realize that she has probably about four or five different cardiac diagnosis, they had to put a pacemaker in her. And they said, "We got to see if this is genetic because the physical structure of the heart is perfect." So they did genetic testing on Jolie, and it showed that she had the gene; the gene, it's a SCN5A gene, which is a variation on that gene. That gene is responsible for sodium exchange in the heart, which would regulate rhythm and transmit signal. So hers was not working so they decided to do the testing to show what it was.

Anna Jaworski :

Okay, and so the only help for her is the ablations and cardioversion and then finally, ultimately, they decided to put a pacemaker in her. So it doesn't sound like there was any kind of medication that was going to fix that sodium exchange problem.

Daphne Davis-Patrick :

So they did try medication and the side effect of that medication caused her heart to stop on two occasions.

Anna Jaworski :

Oh my gosh, that's scary!

Daphne Davis-Patrick :

So they did try and one of the times I was there in the ICU with her when the heart stopped, and I began to chest compression before the team came and took over.

Anna Jaworski :

What a good grandmother you are! Oh my gosh, you probably saved your granddaughters life. Wow, that's amazing. And then they checked Trinity and discovered she had the same problem?

Daphne Davis-Patrick :

Well, when Jolie tested for that gene, they tested her mother, Jahdiel, hers was negative. We tried to get them to check Trinity but because Trinity had no sign or symptoms, insurance denied it. But in 2019, their father, my-son-in-law, had a medical cardiac emergency. And he tested positive for the gene. So he needed cardiac surgery.

Anna Jaworski :

Oh my gosh. Oh my gosh! What... what are the odds of your daughter having a genetic predisposition in her family, then marrying somebody who also... I mean, and neither one of them knew?

Daphne Davis-Patrick :

Neither one of them knew.

Anna Jaworski :

Oh, my goodness. Now please tell me that the father is okay.

Daphne Davis-Patrick :

Yes, he's okay. He has a pacemaker like Jolie, also now.

Anna Jaworski :

Wow. Wow. That's amazing. And so then they said, "Oh, maybe we should check Trinity," right?

Daphne Davis-Patrick :

Yes. So insurance approved it because there were now two members of the same family with the gene. And we found out she also has that gene.

Anna Jaworski :

So what did they decide to do?

Daphne Davis-Patrick :

With Trinity, it's just monitoring. We'll just monitor to see if there was any fainting or anything out of the normal, then they will look to see if she needs any intervention. But right now she is normal. But she has that gene lurking in her body.

Anna Jaworski :

Wow, that's amazing. So you really have been very blessed in your family that - for this generation, in any case, when there was a problem, there was an intervention that was able to save their lives.

Daphne Davis-Patrick :

Yes, yes, it is.

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HUG Info :

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, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at www.congenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Anna Jaworski :

Daphne, I was so impressed with your positive outlook on life despite having lost a son. Tell me how things are different for you being a grandmother, instead of a mother, and looking at the strides made in congenital heart disease in the last 25 years.

Daphne Davis-Patrick :

Okay, so the journey this time with Jolie seems so much clearer now. During Jovel's journey I felt as though we will walking through a fog and things were not very clear. We had minimal medical support. Our doctors told us, "This is the diagnosis. Your baby's gonna die in three months if you don't do surgery," and there was not much information available for us. I was in nursing school. The nursing textbook did not have much to say about truncus. One of the doctors at the hospital; however, he did tear a page out of a medical textbook. And on that page, there was a picture of a heart that was affected by truncus. And the page had about four lines of information. Up to this day, I still have that paper because it was literally all I had to tell me about what was wrong with my son.

Anna Jaworski :

Yeah

Daphne Davis-Patrick :

Yes and now when I look into the cardiac world for pediatrics, it is amazing. There's so much advancement in treatment for the kids. And because of that less parents will go home with empty arms having left their deceased children in the hospital.

Anna Jaworski :

Absolutely, yes. You have seen a humongous change in the percentage of children who pass away because there really was nothing available all the way to the point of now where most of the children do make it home alive.

Daphne Davis-Patrick :

Yes,

Anna Jaworski :

And as a nurse, it must be very different. Did you decide to be a pediatric cardiology nurse?

Daphne Davis-Patrick :

No, I did not. I think I would have been consumed by too much grief.

Anna Jaworski :

Yeah, exactly. Right.

Daphne Davis-Patrick :

But I did have experience working in the pediatric ICU with children who had heart surgery while in Trinidad and Tobago. They did start doing pediatric open heart surgery for cases that was not very complex,

Anna Jaworski :

Right.

Daphne Davis-Patrick :

So I did have the opportunity to care for some of those kids.

Anna Jaworski :

And you're an international nurse, right? You've worked in Trinidad and Tobago, but now you're here in the United States, right?

Daphne Davis-Patrick :

Yes, I worked in Trinidad and Tobago, and I've been in the US for quite a few years now. And I've worked here also,

Anna Jaworski :

I believe you were telling me that you're an instructor now. Is that true?

Daphne Davis-Patrick :

Yes, I am a nursing instructor in a local school of medicine. And I feel honored to be able to impart my knowledge to the younger generation.

Anna Jaworski :

Right. I know that there are some families who are listening today who know or suspect that their congenital heart defects are also hereditary. What advice do you have for these families?

Daphne Davis-Patrick :

I would say ask questions and write down the answers. Because sometime the doctor will be giving you the information but it's so much information that it's always good to write it down so you can look back at the answers after. So ask questions, write it down so that you can review it over and over to understand what's happening.

Anna Jaworski :

Right you get information overload when you're first meeting with the doctors, especially when you think that your child is fine and you don't have a history in your family of children with heart defects.

Daphne Davis-Patrick :

That is correct. And the next thing I would say it's okay to cry. But don't let the grief overwhelm you and consume you that you can't function.

Anna Jaworski :

Right.

Daphne Davis-Patrick :

Yes. There are different stages of grief: denial, the doctor said, "Oh, your baby is ill." You will want to deny that they talking about the wrong baby. They're not talking about my baby. He was well,

Anna Jaworski :

Right.

Daphne Davis-Patrick :

You can become angry. Angry at yourself for missing signs, angry at the doctor for telling you the bad news, angry at the world.

Anna Jaworski :

Ummhmm. Some people get angry at God, too, and that's totally normal.

Daphne Davis-Patrick :

It is. In order to help you go through all the different stages of grief, you want to talk about it. Join a support group, whether it's virtual, via social media or face-to-face. Talk about it with family and friends,

Anna Jaworski :

Or even a counselor. It's okay to go to a counselor.

Daphne Davis-Patrick :

Yes.

Anna Jaworski :

Sometimes an outsider to the family can help you gain a better perspective because they're not grieving. If you talk to your family members, they may be grieving, too, and you may not grieve the same way. So sometimes that can cause problems.

Daphne Davis-Patrick :

Yes, I totally agree. And I would say also let the child live a normal life.

Anna Jaworski :

Yes,

Daphne Davis-Patrick :

Let them blossom and do as much as they can do unless it's not medically permitted.

Anna Jaworski :

Right.

Daphne Davis-Patrick :

So especially in the time that we are having right now with COVID. Based upon your child's condition, you may want to tailor it but don't restrict the child. And of course, I would say genetic testing on other family members will help you deal with the future.

Anna Jaworski :

Yes, absolutely. That genetic testing helps you because knowledge is power. Don't you think Daphne?

Daphne Davis-Patrick :

It is. It is definitely, yes. It lets you know what you're dealing with, and will also help future generation - grandchildren, great grandchildren, etc. Because once a child has that genetic disorder, it can be passed on to other family members, either later on or right now, so you want to do genetic testing.

Anna Jaworski :

Yes, that's all excellent advice. Well, Daphne, why don't you tell us what keeps you going and keeps you so optimistic about life and your family's cardiac journey?

Daphne Davis-Patrick :

Both journeys were rough. We cried. We went through the stages of grief. Our friends helped us Our faith helped us as we went through that journey. And we do quite a lot of activity as a family. Even now we go hiking at least once a week taking Jolie and the other kids with us. We try not to live in a bubble. We enjoy life to the maximum but I will say it has kept us sane that we did not have a mental breakdown because of this congenital heart disease in our family. And because of us going through this journey, I published a book, "Jovel and Jolie's Heartitiude Journey." I would make sure that Anna has the link to put on the website so that if anyone is interested in getting the information as to how we survived this journey, you can get that information. And my personal goal is that our family's experience will be able to help other family that they would not give up.

Anna Jaworski :

I just love that. That is so beautiful and tell us the name of the book again. And do you want to share your URL for the purchase order of the book?

Daphne Davis-Patrick :

Okay, so it's "Jovel and Jolie's Heartitude Journey." That's the name of the book. And it's available at https://drdaphheartitude.com/. https://drdaphheartitude.com/ And we can have the link available for anyone who's interested in purchasing it.

Anna Jaworski :

Thje link will also be in the Show Notes. So if you are looking at the Show Notes on Apple Podcast, or iHeartRadio, or wherever it is that you listen to the podcast, if you read the Show Notes, I will have the link available there as well. I just love how you have been able to stay so positive and how you are working now to help other families who have children through your teaching and through the nursing that you've done, but also through writing this book. That's a legacy that you're passing on to future generations.

Daphne Davis-Patrick :

Thank you.

Anna Jaworski :

Thank you so much for coming on the program, Daphne. It's been a delight getting to know you.

Daphne Davis-Patrick :

Thank you very much, Anna. I feel very honored to be able to share a segment of our life and our experience of living with CHD in our family. And I will tell all parents listening who are currently experiencing life in this journey - don't give up. Thank you very much, Anna.

Anna Jaworski :

Oh, you are so welcome, Daphne. And thank you! That does conclude this episode of "Heart to Heart with Anna." Thanks for listening today, my friends. Please come back next week on Tuesday at noon Eastern Time for a brand new episode. Until then, you can visit us at www.Heartsunitetheglobe.org for more free information and remember my friends, you are not alone.

Conclusion :

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defects community, "Heart to Heart with Anna" with your host Anna Jaworski can be heard every Tuesday at 12 noon Eastern Time.