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!
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.
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 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.
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.