In this week’s blog, amazing heart moms, warriors, and 2 junior advocates talk motherhood and what they love most about their moms in this Mother’s day Q&A.
Thank you for taking the time to share with us! Let’s get started with introductions. Can you tell us a little bit about yourself?
Jennifer Iguina: I am a first generation American, my parents migrated from their countries, Colombia and Chile in the late 70’s. I grew up in Miami, Florida and currently reside in Orlando. I am married to an amazing husband, and together we have four amazing kids! I work full-time as a leasing consultant, and during my free time I volunteer to help lead the Florida PCHA chapter! My youngest child, Lucas, is my heart warrior, and he is 12 years old. I am passionate about CHD advocacy and helping others who have been in the same situation that our family has. We are not alone, and we have to find our voice so that our story can be heard and we can help others!
I am an Adult CHD patient, with Truncus Arteriosus, and have two heart healthy siblings. I work full time and volunteer for PCHA as the ACHD Lead and an Illinois Chapter Board Member. I love to read and have a Master’s in English and Creative Writing. I live in Chicago.
Megha Mahadevan-Shah: My name is Megha Mahadevan-Shah and I am a mother to a 2 year old rambunctious heart kid named Sai.
Megan Setzer: I’m married to my high school sweetheart, Carl. We live in Virginia with our two boys. Our oldest, Ian, is 12 yrs old and is heart healthy. Our youngest son, Caleb, is 10 yrs old and was prenatally diagnosed with a variant form of Hypoplastic Left Heart Syndrome.
I am Taosies. I am a 9 year old survivor of critical CHD. I am a super smiler, a junior Lego master builder, and lover of all things mythology. I play golf and flag football and never miss a cardiology visit.
Carol Raimondi: My name is Carol, and I am an adult living with CHD. I have had 4 open heart surgeries, and am currently waiting for a heart transplant. I am the proud mom to my daughter, Isabella, who is 19.
When was your child diagnosed with CHD? If you’re the patient, when were you diagnosed?
Jennifer: Lucas was diagnosed with CHD during a routine ultrasound, when I was about five months pregnant.
Jen: I was diagnosed with Truncus Arteriosus a couple days after I was born, way back in 1982.
Megha: At our 12 week prenatal appointment we had the genetic tests and an ultrasound (since I was of advanced maternal age) and everything seemed normal until the OB/GYN came in at the end and said that the heart is appearing brighter on the ultrasound then it should be. He didn’t know what was wrong, if anything, and told us to come back in 5 weeks to have an Echo with a cardiologist. At that point we didn’t know if anything was wrong and wanted to be optimistic, but we were scared. At 17 weeks the cardiologist told us that our son did have a heart defect, and as the weeks of my pregnancy went by our son’s diagnosis got worse and worse, to the point that at 30 weeks we were told that he may not make it. My husband and I were crushed and were trying to find some hope. Hope came, as each week went by Sai kept kicking and fighting, and at 32 weeks his prognosis was getting a little better and better.
Megan: My husband and I were referred to a Maternal Fetal Medicine (MFM) doctor, after our routine ultrasound detected an abnormality. We met with the MFM within the week and were told that the baby boy we were expecting had dilated cardiomyopathy and that we needed to see a pediatric cardiologist for fetal ultrasound. Within a few days we were referred to UVA Children’s Hospital, where we met with the fetal heart team. During that appointment, our son was diagnosed with a variant form of Hypoplastic Left Heart Syndrome.
Carol: I was diagnosed with CHD just days after my birth in 1975.
Looking back on finding out your child’s diagnosis, what is one thing you’d tell a mother who has just learned her own child has a CHD?
Jennifer: I would tell her that it is going to be alright! That this journey was not a planned one, but it is the most beautiful gift we could have ever received. Through all of the heartache that we will encounter we will also experience the joy of the little things in life! Prepare yourself, educate yourself, and find your heart family tribe they will be your rock! Take it one day at a time!
Megha: Learning that your child has a CHD is very scary. So I would tell a mother to first do whatever she needs to do to process the diagnosis, and then ask the doctors any and all questions she can think of. Then I would tell her to find support groups like PCHA and connect with other parents that have children with similar diagnosis. Talking to other parents really helped me and my husband. I would also tell her that these heart babies are fighters, and they are so resilient.
Carol & Jenny: Are your moms still involved in your care now that you’re adults? How have your mothers and the both of you handled any change in that?
Jen: My mom is still involved in my care. She still attends most major appointments and cares for me after major procedures. She is my second set of ears! But now that I get to be the decision maker, I think it makes her feel just a little bit less in control. When I was first diagnosed with an arrhythmia and my doctor wanted me to get a pacemaker, I initially refused. I think that not only frightened my mom a bit, but frustrated her as well, because she knew she would make the opposite choice if it were up to her. I also went through a phase on not wanting to tell her what the doctor said, if I went to a visit alone or got a call about test results. I didn’t want her to worry, I didn’t want to be a problem – AGAIN. But we’ve realized it’s better for both of us to talk about whatever it is, so we can work through it together. That way she’s not in the dark or surprised, and I don’t have to face it alone.
Carol: While my mom is not as involved with my care as an adult, she always offers to help out in any way she is able, and I know she is a great resource for remembering procedures I had as a child.
What do you love most about your child?
Jennifer: What I love most about Lucas is his strength to conquer anything and all! Lucas has been a fighter since day one, and he has overcome so many hurdles that we have lost count, and it has taught us all that it is okay! He always has a smile, and he always looks for the positive in the negative situation. At his age he knows about his condition and he knows that it does not define him in any way!
Megan: There are so many things that I love about him! I think what I love most is his fun loving spirit and his laugh! He is adventurous and a little jokester, always looking for ways to have fun and make people laugh.
Megha: I love his curiosity, his laugh, his smile, and his kisses. He is a sweet and caring little guy, with a lot of naughtiness, and he makes my heart smile.
How has CHD affected your perspective on Motherhood?
Jennifer: My perspective on Motherhood changed after coming into the CHD world. It taught me that there is no perfect mom and that all of our kids are different, and that is OK. That we live one day at a time. Motherhood is not an easy task, and raising a child with a complex medical condition does not make it any easier, but it is possible! I have seen mom’s lose their babies and mom’s that have it so much harder than we do. They are the ones who inspire me to keep going and remind me that Motherhood is amazing!
Megan: CHD has been a part of our life for so long now, it seems like I can’t remember a different perspective. What I believe it has taught me is to appreciate all the moments and milestones with our children, the good and the bad.
Megha: Having a child with CHD has made me a little nervous about having a second child. My husband and I definitely want to expand our family, but there is always that thought in the back of our head, could our second child also be born with a CHD? Especially since the doctors do not know why many CHDs happen. But having a child with CHD has also made me stronger.
Carol: I grew up not knowing if I would be able to have a child of my own. When I got the ok from my doctors to get pregnant, I never took a moment for granted. My daughter is my greatest blessing, and I am thankful every day for her.
What has been your biggest struggle in dealing with CHD?
Jennifer: After 12 years, I have realized that I have had way too many struggles on my journey, and during the worst times I was truly immune to it. I now realize that I was on auto pilot during that time. The first two years were crucial for us and our entire family, we had to make adjustments to survive. Raising small children and not being able to be there 100 percent is tough, the financial burden that brings on stress is tough, and having your life flipped up side down is tough. I truly wish I would have known back then what I know now, but the good news is that we are not alone!
Jen: Not being able to keep up. Whether while I was in school, when out with friends and family , or if I am at the gym, I have always been worried whether I’d be physically able to keep up, hold everyone back, or have to sit one out.
Megha: The biggest struggle is the unknown. We have been fortunate that Sai has not needed surgery and he is now on only one medication, but he has a combination of heart defects that the doctors have not seen together before. So they don’t know what will happen in the future. It’s hard not to think about when he may need surgery.
Megan: I believe your struggles change depending on where you are at in the CHD journey. It’s been 7 years since Caleb had his last surgery or intervention, so in some ways life has been relatively normal. Currently, our biggest struggle has been seeing how CHD has impacted our child’s ability to learn in a traditional classroom setting and having to learn how to navigate the educational world to get an IEP in place and supportive services for our son.
Carol: When it comes to living with CHD, the biggest struggle I face is the uncertainty of what is ahead. You hope that each surgery or procedure will be the last one you need, but being a lifelong illness, you always are waiting for what is next.
What is the greatest thing your child with CHD has taught you?
What is something you hope to teach your child?
Jennifer: Lucas has taught me that the sun will always come out again! That the things that I sometimes do not see I can feel in my heart! That life is a beautiful gift and that we need to take a step back and look for the little things. I sometime say that Lucas came to this world to make me a better person, to remind me of things I would have not known, and to show me that I am loved and he is loved no matter what! Thank you, Lucas, for making me a Heart mom, I would not have it any other way! I love you my SonShine!
I hope to teach Lucas that his heart condition does not make him any different or any less than anyone else. That his voice is powerful and that he can follow his heart and reach his goals! To be his own advocate and to empower himself for the CHD life. This will help him through the hurdles he might come across and to know that he is not alone!
Megha: The greatest thing Sai has taught me is to live life a day at a time and to try not to worry about the what ifs.
I hope to teach Sai to be a strong, independent, caring, compassionate person, who also understands the importance of giving back.
Carol: I hope to teach my daughter about perseverance. I want her to know that everything passes in time and that you come out stronger after each battle you face.
What’s something your mom has taught you?
Arytom: There’re a lot of things that she has taught me, but my favorite things are how to write and how to play sports. She also taught me how to cook and that’s important because I like to eat!
Jen: She taught me I can be whatever I want to be. It didn’t matter that I was a girl or a heart patient. I could go after what I wanted and speak my mind. I remember her saying, “If you can read, you can do anything.” I think that exemplifies the importance that was placed on education in our house growing up and that there was no limit on my future, as long as I put in the work. She taught me the value in doing whatever it is well.
What do you love most about your mom?
Artyom: What I love most about my mom is that she takes me fun places, she supports lots of heart kids, and that she is a good cook.
Taosies: My mom is always happy, and she supports me.
Jen: I love how incredibly strong my mom is. I have always admired how hard she works, how committed she is to her beliefs, and how selfless she is. She takes on each challenge that life throws at her with grace, presence of mind, and a little bit of humor, in doing so helps the rest of us through it as well.
Carol: I love that my mom has always encouraged me to do whatever I want, and not let my CHD limit me.
Artyom & Taosies, We’ve heard your mom is really fun, what are some of your favorite fun things to do together? What’s the funniest or weirdest thing your mom has ever done?
Arytom: The funnest things to do with my mom are go to sports games, home-school field trips, and her famous weekend road trip vacations. As long as she doesn’t make Mom jokes in public.
The funniest thing she did was take us to the dentist a week early one time. And they were closed. So we got Ice cream.
Taosies: My mom can sleep anywhere. Especially in the hospital. My dad always takes a picture because it’s so funny. And weird.
You both are CHD Warriors, do you feel like that has brought you all closer together as a family?
Artyom: I think it’s good we are both heart kids. Since Taosies has had a lot of surgeries, he gives me tips on what it will be like. He is my brother and heart friend at the same time.
Taosies: I think it’s special we are a heart kids family. But it makes my mom and dad have lots of work to do.
What’s the nicest thing your mom has done for you?
Artyom: She has done a lot of nice things, and I can’t even choose the nicest. My mom is amazing!
Taosies: Mom let us stay up late when Fuller House came out on Netflix. We had a marathon watching party with popcorn. It was after 10 o’clock! Wow!
As CHD impacts the entire family, what ways have you supported your mom?
Artyom: The way I support my mom is to snuggle her in the morning and ask her if she had a good sleep. And I always make her a really good birthday present!
Taosies: I support my mom by doing jobs around the house and being quiet when she is sleeping.
Thank you all for your insight and words of encouragement!