Heidi Kassner – Lead Coordinator
My name is Heidi Kassner and I became a Heart Mom when my son, Ari, was ten days old. Our perfectly healthy baby boy went into heart failure at home and had to have emergency open-heart surgery at 13 days old. Our world was turned upside down and we had no idea which way was up. Ari was diagnosed with a severe Coarctation of the Aorta, a Bicuspid Aortic Valve, and a growth on his Mitral Valve (which, by the way, had never been seen before we were told!). Our whole family was impacted by Ari’s Congenital Heart Defects, and all I wanted was to meet other families going through the same thing.
When I became a mother to my heart healthy daughter Talia, I craved meeting and networking with other new parents. We were all going through the journey of becoming parents and I wanted to do it together. I remember sitting in the hospital while Ari was in surgery and thinking about how I would network as a second time mother, when everyone I knew had healthy children at home.
A friend reached out to me and told me about Mended Little Hearts. I knew that there needed to be a chapter here in Boston where I could meet with other families and support each other through our journey as Heart Parents. That was the beginning of Mended Little Hearts of Boston, and the start of turning a challenging situation into a positive and helpful one for my family and all the other families I have met along the way.
Laura Dillon – Outreach Coordinator
When our baby-to-be was diagnosed with a Congenital Heart Defect, my husband, Brian, and I were thrown into a very different world; a world of many uncertainties. Although, we knew our baby was in the best hands of medical professionals at Boston Children’s Hospital, we were very frightened and at times felt completely helpless. I desperately wanted to meet another CHD family, to sit and speak with someone who could truly relate to what I was feeling.
I came across the Mended Little Hearts national organization online, and phoned them to ask if there was a local chapter in Boston. To my disappointment, there wasn’t one in the State of Massachusetts.
After our son, Dean, was born and following his successful open heart surgery and recovery, we promised ourselves that we would reach out offering support to others that may be hearing the words “your child has a heart defect”.
The next time I rang the Mended Little Hearts’ national office, I asked how I could start up a chapter in Boston. It took a team of dedicated parents to get to where we are today. I feel very proud and privileged to say I am part of the Mended Little Hearts of Boston team!
Elizabeth Kassab – Membership Coordinator
When Abram was born in July 2014, I sent a text to our friends and family gushing that he was “perfectly healthy—and perfect in every other way, too.” Over the next few weeks Bram spent most of his time snuggled up to me in his sling while I chased his older brother around. He was eating and gaining weight like a champ, packing on an ounce a day at one point. When he was six weeks old we took Bram to a wedding in California and then hopped over to Hawaii to show him off to the ohana there. Less than a week after we got back, I rushed to the ER with a baby who wasn’t eating well and couldn’t seem to catch his breath.
Abram was in heart failure. His mitral valve was severely deformed, but his heart had found a way to pump blood to the rest of his body—until it simply couldn’t keep up anymore. He had open heart surgery to repair the valve and we were optimistic that he’d never need another surgery. But a week out from the surgery an echo revealed that the repair hadn’t held up. We were told he’d need another OHS, likely within a year. He made it three days. His surgeon couldn’t repair the valve this time, so he replaced it with a Melody valve. The next day we learned Abram’s left ventricular function was severely depressed and all we could do was wait to see how much of it would come back on its own.
It was a terrifying and isolating experience, the first time in my life I hadn’t had friends who had been there before me to help me through it. But one of my friends had a friend, and that’s how I met Heidi Kassner and become involved with Mended Little Hearts of Boston.
Today Abram is two. The Melody valve has allowed him to thrive, and his left ventricular function has rebounded to borderline normal. He’ll always have an artificial valve, and the valve will need to be replaced throughout his life, but for now he can be an active toddler with a mad scientist cackle and a stubborn determination to keep up with his brother.
Molly Folly – Education Coordinator
My name is Molly Foley and I am a heart mom. At my 18 week ultrasound during my first pregnancy, I found out that my baby would be born with a congenital heart defect called Pulmonary Atresia/Hypoplastic Right Heart Syndrome and would require three open heart surgeries before the age of 3 in order to have a single functioning ventricle (her left).
The remaining five months of my pregnancy were filled with fear, worry, and doubt. I feared the worst and I was scared to hope for the best. My husband and I spent countless hours at Boston Children’s Hospital’s Advanced Fetal Care Center trying to understand our diagnosis, getting echo after echo, and meeting with the cardiology and surgical teams to consider all of our options and the proposed surgical plan once the baby was born.
On March 4, 2010 we gave birth to a little heart warrior named Haven. She had her first open heart surgery at 4 days old, and while the surgery was a technical success she inevitably had to be placed on an ECMO life support machine where she remained for a week. With only a 30% chance of survival on ECMO, it was one of the most difficult weeks of our lives.
Thankfully, Haven did come off ECMO, and not only that but successfully made it through her second open heart at 8 months and her third at 3 1/2 years old. We were also very lucky and blessed to have two healthy sons born inside that time.
Today, Haven is 6 years old and is a happy, healthy energetic little girl about to enter the 1st grade. She has a 5 year old and a 3 year old brother to contend with on top of it all and she holds her own and is just as feisty as they are. We have been extremely lucky with Haven’s heart journey and we are forever mindful of our good fortune with her continued success and good health.
When we were first diagnosed in 2009, I wanted nothing more than to be connected to another heart mom who could relate to what I was facing and to what I was going through. At the time a Mended Little Hearts chapter in Boston did not exist. I will be forever grateful to Heidi Kassner & Laura Dillon for forming an MLH Boston Chapter in 2014; a place where countless heart moms, dads and siblings can lean on each other for support, advice, counsel, referrals and lessons learned from those who have walked the walk and can share their experience with others. Getting a rare medical diagnosis of any kind can feel very isolating and lonely. It can separate you from the friends and family you are closest too just by virtue of the fact that it feels like no one will ever fully understand just how scared you are. But having the support of other heart families who really and truly understand is quite literally: priceless. And this priceless connection is what Mended Little Hearts Boston is all about.
Krystal & Bart Jones – Social Media Coordinators
We are the Jones Family and would like to introduce ourselves as the Social Media Coordinators of the Mended Little Hearts of Boston chapter. My name is Krystal and my husband is Bart. Before becoming a full time mom to our two daughters, Everly (23 Months) and Reese (6 Months), I was a Registered Nurse in Boston. Bart is a superintendent for a utility company, and in a prior life, was a Staff Sergeant in the US Air Force. We currently Live in Norfolk, MA with our daughters, two cats, and a dog.
Like many first time parents, we walked into our routine 17-week ultrasound, not knowing anything about Congenital Heart Defects. We were so excited at the possibility of finding out if we were having a boy or a girl. At this appointment, we learned our daughter, Everly, had a congenital heart defect. She was diagnosed with Transposition of the Great Arteries, a Ventricular Septal Defect, an Atrial Septal Defect and Pulmonary Stenosis. Everything changed, we were shocked and the news we were having a girl was no longer as important as it was 10 minutes prior. We were told the heart defect was very serious and required open heart surgery in the first days of life, a long road to recovery and lifetime follow up care. It felt like everything in our world stopped and we were devastated. We were referred to the Advance Fetal Care Center at Boston Children’s hospital and were closely followed for the rest of the pregnancy. Everly was born on September 12, 2014. 2 Days later, Everly had a successful Arterial Switch Operation. Everly has been doing great, and a lot of that can be attributed to the support and resources we received from joining Mended Little Hearts of Boston.
The 8th floor at Boston Children’s Hospital is a truly special place. It is here where we were first introduced to the MLH of Boston chapter. There will not be a day in our lives when we look at Everly, that we don’t think of the amazing Heart Center team at Children’s Hospital and the Volunteers of Mended Little Hearts. Their skill and knowledge is certainly incredible, but more importantly, it is the compassion and care they showed us that sets them apart. Every step of the way, they were right there with us. We are also indelibly grateful to those other parents who have gone before us, who have made decisions that paved the way for our journey to have far less obstacles and challenges. We are well aware that Everly is not the only child with TGA and her outcome could have been far different but for the skill and bravery of pioneering doctors and willing participants. Life-saving surgery does not come without loss. We are respectful and humbled by this realization. So on the day we came home, we stood together and gave thanks to the trailblazers who faced neonatal cardiac surgery head on. We also made a promise that whenever possible, no matter how small, we would try and give back to the Hospital that saved our daughter’s life, and the Mended Little Hearts community that was with us every step of the way.
Marlene Perkins – Treasurer
I am Marlene Perkins and I serve as the Treasurer of MLH of Boston. I am the proud mother of Heidi Kassner and the loving grandmother of Ari Kassner our very own heart warrior. After watching what our family went through Heidi felt strongly about getting Mended Little Hearts of Boston started and they needed a treasurer to get the chapter chartered so I volunteered to help them. It is my pleasure to be a part of this group even in this small way. The support that you give each other and the many heart families out there is such important work.
Amanda LaRosee – CHD Awareness Coordinator
My name is Amanda LaRosee. My son, Dominic, is a courageous, smart, funny and wild little boy. Dominic has a variant of ToF and had his repair performed on December 22, 2010. I began raising awareness shortly after Dominic’s surgery as a way to regain some of the control that I felt I had lost when he was sick. Now, not only do I raise awareness for Dominic and all other warriors, but because Dominic enjoys sharing his story. He wants to grow up and make sure other kids don’t have boo-boos on their hearts. I hope that by raising awareness we can bring light to what our children go through and make people aware of how much of an impact congenital heart disease has on everyone effected. I hope to reach out to those who feel lost and helpless, those who feel so out of control of their and their children’s lives, and let them know they are not alone.
Please feel free to email me at firstname.lastname@example.org if you have any ideas on spreading awareness. I am looking forward to working with all of you.
Victoria Wesalowski – Special Events Coordinator
My name is Victoria and I am so thankful that I have been blessed with my three beautiful children. My sweet Juliette is three years old. My brave boy Alexander is my heart warrior. Bennet is my 8 month old who never stops smiling. I am so happy to be a part of the MLH board because there is no better way to show my appreciation than to give back to families who are in need of support.
When I was 18 weeks pregnant with my son Alexander, my husband, Mark and I were told that Alexander would be born with CCTGA. Once his diagnosis was confirmed, we dove in headfirst and researched as much about his disease as we could find. We were so scared but we were so in love with him already that we wanted him no matter what.
All the research in the world couldn’t have taught me what my son has already taught me in the two years that he has been on this earth. I have learned that there is no better way to love, than with the uncertainty of time. Although he is anxious, and timid at times, his smile lights up my house. I get my strength from my son Alexander. His mended heart is the heart of my family. No research told me what an absolute miracle my boy would be.
To date Alexander has survived two open heart surgeries and he has a permanent pacemaker. He is as happy, silly, crazy, and rambunctious as any two year old I know. I can’t wait to see what mountains this boy moves. He is a star and a miracle and the best decision that I’ve ever made.
Melissa Pacheco – Bereavement Coordinator
My name is Melissa Pacheco and I am the wife of Joseph Pacheco and the proud Mom of two heart heroes, Katelyn Rose and Julia Kate. Katelyn Rose was born in 2002 with Tricuspid Atresia and Hypoplastic Right Heart Syndrome. Katelyn was diagnosed in utero and scheduled for the BT shunt upon birth. After the BT shunt at 6 days old, Katelyn endured a very unexpected setback that she could not recover from. After 6 very long and yet very short days on ECMO Katelyn’s heart on earth would not recover. The journey with Katelyn both in the hospital and the days and years to follow, have been extremely difficult, our faith and grieving with Hope- the Hope of seeing Katelyn in Heaven- is what has truly gotten me through my most darkest days.
Three years and one miscarriage later, our third child, would be diagnosed in utero with a heart defect. At that time we were told it was the same heart defect, but when Julia was born we would find the diagnosis a little better. Julia Kate was born with Tricuspid Stenosis, Pulmonary Stenosis and Hypoplastic Right Heart Syndrome, however, Julia did not need the BT shunt at birth, but a cardiac cauterization to open her pulmonary value. Julia is 10 and continues to be seen by her Boston cardiologist. I currently work full time as a higher education professional and have a passion for advocating and supporting heart families and parents who have to endure this journey of grief. I also advocate for education attainment and improving of public schools, including in my small town where I grew up and currently live, Westport, Massachusetts. While everyone’s journey with heart defects and grief is different, I believe the love and support of another, a shoulder to cry on, a person to listen, a hug of understanding, can make a difficult day, just a little bit easier to endure.