In January of 2007 Lucas was diagnosed via utero with Hyploplastic Left Heart Syndrome. We were given three options before his birth – one was a procedure of three palliative surgeries that he would need to survive. Lucas had open heart surgery at 3 days old, a second open heart surgery at 4 months old, and his final open heart surgery at two years old to repair the half a heart he does have, all performed by Dr. William DeCampeli at Arnold Palmer Children’s Hospital in Orlando. He has had many interventions since birth, his last intervention was a stent replacement in February of 2016. He also has a blood disorder that causes his red blood cells to not break down easily. CHD is lifelong, there is no fix or cure, and its care is complex but there is hope. Lucas is doing amazing today, he enjoys to live life to the fullest and does not let his CHD hold him back. Our family is active and we advocate for the CHD community to support families just like ours and raise awareness. Lucas has visited D.C a few times to advocate for CHD and plans to continue having his voice heard! Together we can conquer CHD!
Ezra was born August 13, 2014 in Minneapolis, Minnesota with Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Coarctation of the Aorta, and Ventricle Septal Defect. He underwent a successful Norwood surgery at 5 days
old. He had a heart cath at 4 months old which
led to his 80 minute cardiac arrest and caused a severe anoxic brain injury. He wasn’t
expected to live 4 months following the arrest,
let alone to his 1st birthday. He lived a joyful life
with loving family and friends until November
4th, 2016 when he suddenly died of heart failure.
Ezra had a huge smile and touched the lives of
everyone who knew him.
Ezra’s parents are grateful for the lifesaving and compassionate care he received through his life. Together, with Project Heart To Heart, Ezra’s parents have started the Ezra John Unzen Scholarship. The scholarship will be awarded to high school seniors in the Hermantown, MN district who want to pursue a career in healthcare. With the first scholarship being awarded in May 2018, Ezra’s memory lives on not only through the life he lived, but through the future doctors, nurses, and healthcare professionals coming out of the Hermantown School District.
At our 20 week anatomy scan, we found out that our little girl has a congenital heart defect (CHD). Shortly after this news, we were referred to a high risk OB and a pediatric cardiologist. When we saw the ped cardiologist, he broke the news that she does indeed have a complex heart defect which is VERY rare. Our baby has congenitally corrected transposition of the great arteries (ccTGA), ventricular septal defect (VSD), pulmonary stenosis (PS) and dextrocardia. 1% of pregnancies end up with a baby with a CHD. Out of those one percent, .5 – 1% end up with ccTGA. That is how rare the defect is! Only 5,000-10,000 people in the US have this condition!
A little bit about her condition: In ccTGA both ventricles (pumping chambers) of the heart are reversed. Fortunately, the arteries are reversed too, so the heart actually “corrects” the abnormal development, thus the name “congenitally corrected transposition of the great arteries.” However, ccTGA is a complex malformation in which the heart is far from being normal.
In a normal heart, the left-side pumping chamber (left ventricle) sends blood to the entire body. The right-side ventricle pumps blood only a short distance, to the lungs. The left ventricle is built to last longer than the right ventricle: 80 to 100 years if no other health problems exist.
In ccTGA, the heart twists abnormally during fetal development, and the ventricles are reversed: The stronger left ventricle pumps blood to the lungs and the weaker right ventricle has the harder chore of pumping blood to the entire body. The right ventricle is not built to last as long as the left ventricle. Emersynn is currently almost 5 months old and has not had any surgery thus far! She is defying all odds and doing SO amazing! She is growing well and hitting all of her milestones on or before (!) she is supposed to! This little girl amazes me more and more everyday! She is such an inspiration to everyone around her and is such a strong little warrior!
Jennifer Weiner was diagnosed with Truncus Arteriosus and a VSD after birth in 1982. She has had two open heart repair surgeries, at 18 months old and 17 years. After complications arose and various anomalies were uncovered in early adulthood, Jennifer had a stent placed in her LPA and received an ICD. Now 35, she is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing, from SNHU. Jennifer currently volunteers for the Pediatric Congenital Heart Association, both nationally and locally, managing the PCHA Blog and IL Chapter Communications. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago, and writes for Heart to Heart with Anna, a CHD themed podcast. Jennifer will continue to be followed by an Adult CHD team throughout her life.
For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the fourth post of our series, Emily Inman shares the story of the day her family decided to give the gift of life, after her mother’s unexpected passing.
My mom had just gone back to work after taking off another long stint under the Family Medical Leave Act. She worked the 3pm – 11pm shift as a secretary at a trucking company. This meant I was back spending my evenings and parts of my nights at my grandparents. I didn’t mind. Grandma spoiled me. But I was used to having my mom around since she took off so much time under the FMLA. I was waiting for a bone marrow transplant. I didn’t have a match because I’m an only child, and, as luck would have it, no one in family was closer than a half match. I had just undergone several rounds of chemotherapy, steroid treatments, and an experimental stem cell transplant. I was still in reverse isolation and unable to attend school and activities.
I admit, it was a little scary not having her there even though I was at Grandma’s. She would call me during her lunch break to check on me and what not. On this particular day, the phone didn’t ring. Fifteen minutes into her lunch break it still didn’t ring. I knew something was wrong. I asked my Grandma if I could use the phone to call her. She said no. I defiantly used Grandma’s bedroom phone to call her office. One of the office ladies made up some story about how she couldn’t find her. Now I definitely knew something was wrong. About 5 minutes later the phone rang. Grandma picked it up. I deviously picked up the phone in Grandma’s bedroom to listen in on the conversation. I couldn’t believe my ears: “Mrs. Vasquez, we found Patty passed out at her desk. She was rushed to the hospital. You need to get there as soon as possible.”
The next couple hours were a complete blur. I don’t know if they were a blur from all the commotion, from my young brain trying to block it out, or from all the cancer drugs I was on. The next thing I remember is walking off of the elevator and down the hall to the ICU at the hospital. My dad, who was an over-the-road truck driver at that same company, was sitting there still wearing his Carhartt and covered in dirt and oil, with his hands over his face. I had never seen him cry before. And there he was. Beet red and crying like a baby. The nurse came in and explained to me that she had a brain aneurysm. She was basically brain-dead by the time she got to the hospital. We walked over to her room. I peered in the glass and she was laying there lifeless. Tubes, wires, and equipment were everywhere. If I close my eyes, I can still see her laying there with the breathing tube in her mouth. I said goodbye to her. And I thanked her for being the best mom I could ever ask for.
Grandma took me home, gave me all of those cancer drugs no child should ever have to take, and put me to bed. Behind the scenes, the pediatric cancer doctors we were working with at the University of Wisconsin-Milwaukee flew down by helicopter and harvested her stem cells in case I never found a bone marrow match or the experimental stem cell transplants didn’t work. The doctors then pulled the plug. Patricia A. Inman passed away March 1, 2001.
My mom helped to organize multiple blood and bone drives not only in hopes of finding a bone marrow match for me, but for finding matches for all others out their searching for their continued gift of life. We learned that what made it so hard to find me a bone marrow match was that I am of fifty percent Hispanic/Latino origin. My mom made it her mission to spread awareness about minority blood, bone marrow, and tissue donation, and to register as many people as she could to donate.
She then became an organ donor and her heart, both eyes, both kidneys, both lungs, liver, and pancreas were all donated. They went to recipients ranging in ages from 7 to 73. The mom of the 7-year-old boy who received one of her kidneys sent us an update on his condition right after his transplant. I was elated to read it. He was doing well and his prognosis looked positive. He liked to play baseball and couldn’t wait to be back out on the field. She asked if I would mind sharing something about my mom. The 73-year-old woman who received her heart also reached out and asked if I would mind sharing something about my mom. I shared that she is dancing in heaven knowing her organs went to so many people. She devoted her life to giving back, and now her afterlife is devoted to giving back as well.
Emily Inman is originally from the Chicagoland area, and is an only child from a large Latino family. She was diagnosed with a very rare form of bone marrow cancer, called aplastic anemia, when she was 10-years-old. Emily needed a bone marrow transplant, but never found a match. She received several experimental stem cell transplants that ultimately saved her life. Emily’s mom, Patricia, passed away from a brain aneurysm while Emily was still undergoing treatment. She grew older, entered remission, and eventually went back to living a “normal life.” Emily received a B.A. in Journalism & Mass Communication and Global Health Studies from the University of Iowa. She stayed at U of IA and got her Masters of Public Health in Community & Behavioral Health, as well as Health Communication with a concentration in Cultural Compentency. Emily is now serving her second term with the Illinois Department of Public Health AmeriCorps. She serves as the food access for an organization that conducts homelessness prevention and intervention in the South Suburbs of Chicago.
For the month of March, PCHA will be focusing on the theme of National Reading Month. In the 2nd post of our series, PCHA asked members from across the spectrum of our CHD Community to tell us what they love about reading. Sharing with us this week, about what reading has brought to their lives, are Megan Setzer from the perspective of her son Caleb, born with Hypoplastic Left Heart Syndrome, Alison Connors, mother of two heart warriors, McKenzie and Archer, and Carol Raimondi, an Adult CHD patient with Congenitally Corrected Transposition of the Great Arteries.
PCHA: Why do you love to read?
Megan + Caleb: I’m still learning to read. I love being read to. I like feeling like I’m part of the story.
Alison: Reading is a great escape for me. When I read I am able take time to myself to decompress. Life can be stressful and having that outlet is so important. Reading is probably the most important skill you learn besides math.
Carol: I love to read because it relaxes me. It allows my mind to focus on the story, and take me to wherever it is set. I can be in a place where the characters are, and that lets me temporarily forget any stresses or worries I have going in my life.
PCHA: Where’s the best place to settle in with a good book?
Megan + Caleb: Anywhere. My favorite place is to snuggle into my bed and look at books before I go to sleep at night.
Alison: The best place to read a book is anywhere! A good book can be read in the loudest place imaginable, because once you start reading you are taken to a different place anyway!
Carol: I love stretching out in bed when I read. Being somewhere with little distraction is key!
PCHA: What’s the best part of your favorite book?
Megan + Caleb: Everything! I don’t really have a favorite.
Alison: For me, I like to read historical biographies of famous figures, like Abraham Lincoln, Che, Jackie O and Benjamin Franklin. Reading about the lives of historical figures and about our past customs in American history is a favorite of mine.
Carol: I really don’t have one favorite book. Anytime I can relax and read for an extended period of time makes me happy!
PCHA: What character, from any book, do you most identify with?
Megan + Caleb: There is a small part of all the characters that I can identify with. I am strong like the Super Heroes that I read about and I’m silly like the funny creatures in the Dr. Seuss books.
Alison: When reading historical biographies I don’t necessarily identify with the characters I read about, but one thing about reading about someone’s history is that the past does sometimes repeat itself so I can see how America and the world hasn’t really changed as much as we all assume it has. Technology has changed but as human beings we are still fighting over the same things, fighting for the same things and uniting about the same things. It’s very interesting.
Carol: I tend to identify with any female lead character. Someone who has obstacles to overcome time and time again, but stays strong and shows perseverance.
PCHA: Do you have a favorite author or genre? What do you like about that style?
Megan + Caleb: Dr. Seuss is my favorite author, because his books are funny.
Alison: Historical biographies are pretty much all I read. I figure I’d like to learn something while I am making the time to read. Abraham Lincoln is probably one of the most interesting people I have ever read about. How he ran the country, how he united with his rival, his views on leadership, and work ethic really impressed me. As a person you are always evolving, so whenever I can learn something from reading, I feel accomplished.
Carol: I tend to vary on the genre I read. Sometimes I will read medical non-fiction, as I enjoy learning about disease management and how others have handled living with chronic illness. Other times, I prefer to go the exact opposite and stay light by reading fantasy books. Anything with a vampire or werewolf will suffice! It is nice to escape reality and let my imagination go wild!
PCHA: Have you ready any books involving characters with CHD? How’s they hold up to your own experience?
Megan + Caleb: I have read the book, Zipline…It’s about a girl who had a heart surgery, and she is all better now. Unlike this character, I have had multiple heart surgeries. I also have a hard time keeping up with my friends when they are running around the playground.
Alison: I have not yet read any books involving characters with CHD! I will have to look into that! Every CHD story is different, which probably why CHD is not as well-known as I would like. Having over 35 different types, so many different outcomes, and sometimes having multiple CHDs really makes every Heart Family’s perspective completely unique, but I think each of us, whether your child’s ASD closed by itself or whether you child is on his/her 4th surgery, we’re all the same. We’re shocked, worried parents who strive to give our children the best life possible, and we’re not alone in this CHD heart journey. Heart parents and patients are pretty passionate people, so I think I would definitely relate to a book with a CHD character.
Carol: I have read several books with CHD patients as the main character. In some cases, I have identified completely with the feelings they have shared, to the point where it hits too close to home, and I need to put the book down for a few days. In other circumstances, I felt like the CHD patient did not give a good representation of what life is like with heart defects. It was either overdramatized or made to seem like it wasn’t a big deal. I prefer a happy medium between the two.
PCHA: What’s missing from bookstores? What book would you like to see on the shelves?
Megan + Caleb: I don’t know what’s missing from the bookstores, because most of my books come from the school Book Fair, in the mail, or are on my tablet. I love it when the Book Fair comes to my school and seeing all the different types of books that they have!
Alison: We lost my husband’s Mother, Nicky, suddenly last year. She was a fiction writer. She worked hard for her kids, and, when they were grown, she worked hard for herself. She went to Columbia College in Chicago and worked there as well. She was the coolest person to have as a Mother-in-Law; every time I talked to her she challenged my thinking, inspired me to be a strong woman, and always gave my husband a hard time, which was fun to see! I always thought we would have more time with her. I would love to see her works put into a book. She always talked about having so many works, pages and pages of unfinished work, a life unfinished. Maybe one day, as a family, we can make that happen. I would love to sit one day, open a book by Nicky Chakalis, and read it to the next generation of our family. For me, that’s what is missing on the bookshelves.
Carol: I would love to see more books geared towards teens on living with chronic illness, whether CHD or not. I think this an important age group that needs as much information as they can get. What book would I like to see on the shelf? A manual for life with CHD, from pre-natal diagnosis through adulthood, with chapters specifically for family members, friends, spouses and health care providers. That’s not asking too much, right?
Megan Setzer is a mother of a child with Hypoplastic Left Heart Syndrome. With a background in Social Work, it has become her passion to provide support and resources to those impacted by CHD. Shortly after her son’s birth in 2009, Megan chartered Mended Little Hearts of Winchester as a way to connect area families and to offer support and resources. Under her leadership, the group was honored with the 2012 MLH Group Excellence Award and it continued to grow its network. In 2013, her group expanded geographically and became Mended Little Hearts of the Shenandoah Valley, serving families in the Shenandoah Valley of Virginia and Panhandle of West Virginia. She was elected as the Mended Little Hearts National Board Director in 2013, where she served until December 2016. She is currently serving as a Board Director for the Pediatric Congenital Heart Association.Megan has a Bachelor’s of Social Work from James Madison University, graduating in 1999. She worked for almost 10 years as a Medical Social Worker, and is now employed in the health technology field as a Clinical Advisor, specializing in care transitions. When she is not volunteering, she is kept busy by her husband and two boys. She loves to read and crochet.
Alison Connors is a mother of three children: McKenzie, Jackson and Archer. Her oldest McKenzie and youngest Archer both had open heart surgery for congenital heart defects. McKenzie and Archer have been in the care of the PSHU team at Advocate Children’s Hospital in Oak Lawn, Illinois since birth. Alison has been married since 2009 to her best friend Christopher, and she recently went back to work as a 1:1 teacher’s aide for children with special needs. She and her family have a busy life, but she has a passion for volunteering and believes that there is healing power in taking part in something that is bigger than yourself. Having two children with CHD threw Alison onto a path she never expected to be on, but a path her family is very grateful to be on. It’s an honor for Alison and her family to share resources, give hope, and support to others who face the same situations that they have.
Carol Raimondi is an adult CHD patient and nurse, living with Congenitally Corrected Transposition of the Great Arteries. She has had 4 open heart surgeries in her 40 years, as well as a pacemaker since the age of 6. After spending a large part of her childhood in and out of hospitals, she developed a passion for nursing. She went to school to become a cardiac nurse. Carol’s many hospital experiences helped her as a nurse to better understand what her patients were going through and to care for them with that much more compassion and empathy.
Due to worsening medical issues, Carol had to give up the profession she loved. That did not stop her from being a patient advocate, however. She joined her local hospital’s’ Patient Family Advisory Council, which she now co-chairs, and shortly thereafter she joined Mended Little Hearts Chicago(MLHC) as an adult CHD liaison. She then expanded her work in the CHD community by starting an adult and teen CHD group within MLHC and became an Ambassador for the Adult Congenital Heart Association. Currently she sits as the Pediatric Congenital Heart Association of IL(PCHA-IL) Vice President and State officer, after a recent transition from MLHC. Her proudest moments are when she is advocating and raising awareness for the CHD community, both on Capitol Hill in D.C. and locally.
JJ Merryman was born on November 10, 2015. At four weeks old, he was diagnosed with coarctation of aorta, requiring emergency heart surgery. At 11 months old, he was diagnosed with recurrent coarctation of aorta. His aorta had narrowed again and he had a balloon angioplasty cathaterization. JJ will be followed his whole life by a cardiologist.
Our daughter Harper was born on January 16, 2015. We knew before she entered this world with us that we would be faced with some challenging situations. Harper was diagnosed with HLHS at 25 weeks before birth. We knew she would have to overcome many obstacles, but not once did we lose our faith that God would take care of our girl. She was born 7lbs. 7oz. 18 inches at 2.09 pm @ Vanderbilt. She was exactly what I imagined she would be beautiful and rosy pink.
When she was three days old she underwent her first OHS known as the Norwood. During this time waiting to see how she was doing we were informed by our Cardiologist Dr. Mettler that her heart was the poorest they have seen in a very long time. They didn’t think she would make it through the night. But our God came through and she was put on ECMO for about 14 days. During those 14 days she underwent all sorts of different procedures trying to give her the best shot to come off ECMO. She finally did and we were so proud God pulled through for us once again. She did well and looked amazing for 7 days.
During the 7 days they did many ultrasounds to make sure all was well with her and it was, but they didn’t predict what would happen next. We went home just to get a good nights rest with her older brother Gavin. I kept telling my husband (Josh) that something just was not right with her. I had that feeling. I kept telling the drs but they assured me that they didn’t suspect anything form all the tests they had ran. But early morning I called to check on her before heading back and the nurse reassured me she was doing well and had a great night. But 15 minutes later they called back and she had went into cardiac arrest. I knew it I said and I flew up to Vanderbilt. When I arrived I knew that feeling that she was not going to be ok from now on. She immediately went back on ECMO and sustained being on that machine the rest of her time.
After cardiac arrest they did numerous test EEG, EKG, and ultrasounds. They even took her back again for another OHS to try and remove the clot but it was gone and we thought our prayer was answered then. But little did we knew it just moved around in her little body messing every organ up that stood a chance. During the next couple of days we watched her to see how she would progress. They decided they would take her back for another OHS to redo what they did in Norwood and just rerun her bt shunt straight to her lungs. I thought ok this is it we got this. But over time her progression just seem to worsen and we as parents had to dig deep and come to a conclusion that God needed her and we were so lucky to have her as long as we did.
Days to come she was put on dialysis to get the fluid off. She just was not doing well at this point. They told us during many meetings with them that a time would come when we would have to call family to come see her. So we called every close relative to come as soon as they could. We waited out three days of visits just to make sure everyone got to see and hold her as best as they could.
On the 15th of March at noon they would slowly turn down the ECMO machine to see how she would do. Within minutes we all knew that this was it for Harper. Her lips turned blue instantly. We prepared at that second a time we thought we would never have to face as parents. I held her in my arms and as my husband sat beside us as we watched her pass in my arms. I know that God was right there with us the whole time. Harper lived for 59 days but most of her life was spend on ECMO except 7 days.
We heard the words no parent wants to hear at our 20 week appointment, “there’s something wrong with her heart”. After many doctors appointments we found out our sweet baby girl had Truncus Arteriosus. This was not only a severe CHD but a very rare one at that. We did lots of research and educated our selves, we interviewed both Dr Metler and Dr Bichell and ended up loving both of them. Dr Bichell did Callie’s surgery 8 days after her birth. It was a success with one complication Callie’s pulmonary arteries are very small and she now has pulmonary hypertension as well as mild aortic stenosis. Callie is now 5 months old and we are preparing for her first heart cath. This journey has been the scariest thing our family has ever been through, but it has defiantly made us stronger. Our daughter shows us everyday what a true fighter looks like.
Our son, Eli was diagnosed pre-natally at the 20 week ultrasound with a congenital heart defect. We were absolutely devastated and terrified at this news, especially when we learned that he would undergo open heart surgery quickly after birth. His surgery, at one week old, went well and he came home in 17 days. At 4 months old, we realized that he wasn’t growing and under doctor’s care we altered his diet. We were relieved that he quickly turned a corner.
In March 2016, he had his second open heart surgery and came home in just 72 hours! Less than a week after surgery he was jumping off couches (his mommy was both relieved that he was himself, yet terrified that he wasn’t resting enough.)
Eli celebrates his 4th birthday in February 2017 and is a rambunctious, charming, affectionate, energetic pre-schooler who loves to draw, play soccer, give lots of kisses eat chocolate chip cookies in two bites. But having a heart defect is a lifelong condition and it affects our entire family. Our daughter, who is almost three years older than him, adores her brother and has a tendency to worry.
We are confident that he is receiving the best care and try to truly enjoy every day with our strong little family. Our family has been very active within the heart community, committed to supporting families like ours, while always building awareness of congenital heart disease within our community. Eli’s mom has already been to D.C. once to advocate for CHD families and she plans to go again in 2017.