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!
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. 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 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.
Bart Jones is the lead coordinator at MLH Boston. Bart is a supervisor for an electrical utility contractor, and in a prior life, was a Staff Sergeant in the US Air Force. Bart lives in Norfolk with his wife Nikki, and daughter’s Everly (3) and Reese (1).
Like many first time parents, My wife and I 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.
When I was born, I was diagnosed with Tetrology of Fallot, the doctors knew right away that I was going to need open heart surgery, but back in the day surgery wasn’t sophisticated enough to have it be performed on a day old infant, and they wanted me to wait to gain weight and get stronger naturally to have a more successful outcome. I underwent two cathartizations at 2 and 4 months old to open up my pulmonary artery. Finally, at roughly 6 months old, I was admitted to Boston Children’s Hospital on July 1st and had my open-heart surgery performed on July 2nd. I was able to see the Boston Pop’s from my 8th Floor Cardiac NICU room and I have always considered those fireworks that year particularly celebratory for my successful repairs.
Growing up with a “heart condition” was really scary for me and still to this day hospitals trigger a lot of anxiety. Thankfully, I had support and understanding from my friends and family, but back in my day as a child there were no traditional support programs nor did I know any other kids with the same struggles I had. I didn’t necessarily get bullied or targeted for having a scar, but I was lucky enough to turn some of my self-doubt into a really funny and outgoing personality - none of which would have been possible without my mom or my medical support team! I remember getting quizzed about my heart condition each time I went to Children’s or UMASS for a follow up. I made sure that I focused on living the best life that I could and to do that I learned and learned a LOT! I made sure my intellect outshined whatever “condition” I was labeled with and in some way it helped me cope with it as well.
I learned of Mended Little Hearts Boston when I did my second Eversource Walk some years ago; my mom was working at BCH and told me about this organization. We decided to walk with them and raised money for their organization. I knew that in the future I would connect with them again!
Today, I live in this world
(mostly) complication-free. I work as a child and family therapist at two
wonderful organizations in Central Mass and the Metrowest Area. I’ve been
blessed to get a great education, marry a wonderful “Heart Husband”, my cats
are my absolute pride and joy of my life, and I live in an adorable home in
Central Mass. All of these things would sound fulfilling, but I knew that my
work wasn’t fully done until I reached back out to Mended Little Hearts Boston.
After meeting a board member, and a mom of a special Heart Warrior, it clicked
that this was the next chapter in my life, that this was the support I needed
al along! I didn’t actually
meet my first Heart Warrior with TOF until just this year, and it was only
after being re-introduced to Mended Little Hearts Boston! I hope to be able to
share all of my personal and professional knowledge with this team and with
other families to provide hope that life does go on and that being a Heart
Warrior just means that we get the honor of turning our worries into wisdom.
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.
Krystal is the Education Coordinator and the Social Media Coordinator at MLH Boston. Krystal is a Registered Nurse and works in the Progressive Care Unit at Milford Regional Hospital. Prior to that, Krystal worked as a Triage Nurse at Harvard Vanguard and at Beth Israel Deaconness Medical Center. Krystal lives in Norfolk MA.
The 8th floor at Boston Children’s Hospital is a truly special place. It is here where my husband and I 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.
My name is Sherein Khater, I was first introduced to Congenital Heart Disease when I met Lisa, my daughter’s aunt. Lisa was born with Transposition of Great Arteries, and received a heart transplant at 19.
Almost a decade after her transplant, and five months in to my healthy pregnancy Lisa passed. While still grieving her loss, I became a Heart Mom when my daughter Mackinsey was diagnosed with tetralogy of fallot with pulmonary stenosis of the right valve at two days old. Her left valve narrowed and right valve completely closed, Mackinsey underwent her first open-heart surgery on January 5th 2004, at two months old. At four, Mackinsey had her second open-heart surgery to remove muscle that had grown around her valve. In January of 2018 she had her third surgery, a successful Pulmonary Valve Replacement at Boston Children’s Hospital.
It was in preparation for this third surgery that I was introduced to Mended Little Hearts of Boston. Through this wonderful network I have been able to find comfort in knowing that there are other parents who understand the ups and downs of the Heart Warrior’s journey.
In November of 2016, our daughter Keira began collapsing when she was just twelve months old. During these events she would stop breathing and was unresponsive. After she suffered multiple of these events she was rushed to Boston Children’s Hospital where she was diagnosed with a rare variant of Vasovagal Syncope which causes Extensive Sinus Asystole, which means each time she collapsed-her heart was stopping. Keira underwent surgery at Boston Children’s Hospital in 2016 to have a pacemaker implanted.
Our life was completely turned upside down when Keira got sick. We had just been told a week prior at her one year check up that she was in perfect health, only to find ourselves days later at her bedside in the ICU learning that her little heart was stopping. I will never forget her doctor telling us about what was happening to her heart or that feeling I had like the floor was coming out from underneath me. The fear, the worry and the trying to balance everything when your world is falling apart is something that you can only understand when you have lived through it. Trying to digest everything her doctors were saying and make medical decisions with her team all while trying to care for her and our other two young children was incredibly difficult.
Today Keira is doing so well. Our family couldn’t be more grateful for the care Keira received. We continue to learn and adjust as she needs us to. Keira has taught us so much already, especially to be grateful for every single day.
One thing that was really difficult with Keira’s condition being so rare is that it was really hard to connect with other families that have gone through similar experiences. Sometimes it can be so helpful just to talk with someone who gets it. I’m so happy to be a part of Mended Little Hearts Boston and the work that they are doing to support families in the heart community. It’s so important for families to have a way to connect with other families and with their heart community.
My husband Colin & I live in Norwood with our three children, Xavier (8), Elaina (6) and Keira (2).