Heart week: our patients and families share their amazing stories

Parker medical smileThe human heart, no bigger than a fist, is the hardest working muscle in your body. On average, it pumps out two ounces of blood with every heartbeat, and moves about 2,500 gallons of blood each day. But that’s only when a person’s heart is functioning correctly. When a person’s heart is sick, medical complications can be potentially fatal, especially in young children whose smaller sized hearts can complicate treatment.

Children’s Hospital Boston is a leader in pediatric cardiovascular care, and has been since 1938, when Children’s doctor Robert Gross, MD, performed the world’s first successful surgical repair of a congenital heart defect.

This Thursday at 10 p.m., Boston Med will feature Children’s doctors Francis Fynn-Thompson, MD, and Elizabeth Blume, MD, as they work together to save the life of a teenage patient with a life-threatening congenital heart defect. In honor of the episode, Thrive is devoting this week’s coverage to pediatric cardiovascular conditions, their research and treatment here at Children’s. Here are some stories about Children’s heart patients that we’ve helped over the years.


Do you or a family member have a story that you’d like to tell? Please write your experiences in the comments and we’ll do our best to help you share your story with the world.

So many great stories! The medical field can be a tough place to work sometimes, but tales of success like these are so inspiring and moving. Check out what former patients are saying about their Children’s experience on our Facebook page.

28 thoughts on “Heart week: our patients and families share their amazing stories

  1. My 4 year old daughter Julia was born with a congenital diaphragmatic hernia and a congenital heart defect, co-arctation of the aorta. Dr. Bacha performed open heart surgery on Julia when she was 6 weeks old. When people ask about the scar on Julia’s back shoulder blade they are amazed to learn its where she had open heart surgery. Our family is so thankful for everyone at CHB for the wonderful care Julia received!

  2. I was born in 1983 with Truncus Arteriosus and Interrupted Aortic Arch (IAA). At that time, my parents were struggling with the loss of my older daughter from Truncus while also dealing with my 2 1/2 year old brother. They turned to Children’s Hospital for their care, and were put in the hands of Dr. Aldo Casteneda. I was in the cath lab at 6 hrs old, had open heart surgery at 18 hrs old, 6 months old, and 3 years old. He is an amazing man who has done a great deal for this field, and is this week is celebrating his 80th birthday. My family and I are grateful to Children’s Hospital. 26 years later, I am one month post op from my 4th surgery on a conduit repair from the Truncus. I am not sure that without the expertise of the team at Children’s Hospital, that I would be standing here today. I have been married for 2 years, and we look forward to starting a family. Thank you Children’s, and your heart team, for saving my life, and helping our family, as well as so many other families in this world.

  3. My son Jayden was born with a congenital heart defect called Tetralogy of Fallot. At 3 months old he underwent open heart surgery performed by Dr Pedro del Nido in Oct of 2004. Since then Jayden has been a healthy, happy boy who enjoys every day playing with his twin brother. We visit Boston Childrens often for follow ups and all the other … See Moreprocedures that follows a child with a CHD. But visiting is always a pleasure and we feel very lucky to have CHB in our lives. They gave our little boy the chance to live a wonderful, happy life and they gave his twin brother the priceless gift of his best friend !
    Thank you to the wonderful staff !

  4. Our daughter was diagnosed with Aortic Stenosis about 25 weeks into our twin pregnancy. We spent a lot of time at the Advanced Fetal Care Center at Childrens Hospital Boston monitoring her through the rest of the pregnancy. My twins were delivered at 37 weeks and Genevieve was immediately transferred to CHB where she underwent a catheter procedure to relieve the narrowing in her aortic valve. It is almost 2 years later and we are now preparing for Aortic Valve Repair surgery at CHB with Dr. DelNido in August to repair the valve. We are thankful to live so close to the best doctors in the world and to have the love and support of our family as we balance life with a daughter who has a congenital heart defect, the needs of her twin brother . . . and life with 2 almost 2 year olds underfoot!

    Thank you to Childrens Hospital Boston for being there before the birth of my twins . . . as well as after!

  5. We never had any personal experience with Children’s Hospital, but when our son was diagnosed with CAVC at three days old, we knew that was where we wanted to be. I have personally worked at three different hospitals in the area, and have never seen anything that comes close to the organization, thoroughness, care and professionalism that you experience at Children’s.

    When Dr. Lang walks into a patient’s room, the first thing he does is spend a moment just gazing at your child. I’m sure in his head he’s making careful and calculated observations, but to us, it seems like he’s watching just for the joy of watching a baby. He immediately put us at ease, and we knew that our son was in the best hands we could have hoped for.

    When the day came, just 11 short weeks into my son’s life, for Dr. Mayer to operate on him, we were terrified – of course – but the day was made less intimidating by the process they have in place. We knew at every moment where they were in their procedure. We knew who to turn to and we knew they could and WOULD get us answers at any time. And when Dr. Mayer emerged, his lab coat casually slung over his shoulder, to inform us he had just successfully saved our son’s life, I could have gone to my knees to thank him.

    My son is now just 2 months shy of his second birthday. If you didn’t know, you wouldn’t know. He has a few scars. He has a slightly audible “leak” in his new, miracle valve, that only a physician would be able to detect. He’s a little underweight for his age. Beyond that, he’s perfect. He’s just perfect, and he did not enter this world so. It is only because of the collective efforts of the entire Cardiology staff and especially Dr. Lang, the CICU, Dr. Mayer and the surgical team, and the staff on 8 East that he is alive and well.

  6. Timmy had a partial anomalous pulmonary venous return, an ASD and a VSD, and SVT. Dr. Mayer brought him in within a week and corrected all the physical problems. Timmy still has the SVT, but the great folks at Children’s are the best. When and if Timmy needs the ablation, we know who we will be talking to! Everyone there treats us with concern, care and professionalism, and they happen to be the best in their field.

  7. When our son Aiden was born, he seemed like a healthy newborn boy. The pediatrician did notice a heart murmur and then had difficulty finding his femural pulses. When Aiden was 4 days old he was transferred to CHB and diagnosed with a coarctation of his aorta and a bicuspid valve. It was such an overwhelming time for all of us. Dr. Emani performed surgery to repair his aorta when he was just a week old. The doctors, nurses, and child life staff were so helpful, compassionate and outstanding during our stay there. I am so thankful that CHB is in our “backyard” and that Aiden was able to get the help that he needed. He is a happy, healthy 8 month old now with just a small scar on his shoulderblade to show for what he’s gone through. Thank you to everyone at Children’s for all of your help!!

  8. When my daughter was diagnosed with truncus arteriosus at age 9 days old in 2006, I was in a state of shock. I knew nothing about heart defects and I felt like it was the end of our world. Truncus is rare and much of the information online was outdated and painted a poor prognosis. Fortunately, we live in RI and were referred to CHB. Our daughter had open heart surgery with Dr. Fynn-Thompson at age 15 days and received excellent care from the team at Children’s. When I became pregnant again in 2008, we were shocked to discover during a level II ultrasound that our unborn baby also had truncus. It is exceptionally rare to have two cases of truncus in the same family. We started receiving care at the Advanced Fetal Care Center, and made plans for Tarynn to be delivered at Brigham so she could be transferred to Children’s shortly after birth. Dr. Lacro and nurse Terra took excellent care of us before our baby was born, and were awesome advocates for us in getting the care we needed at Brigham. Once Tarynn was born, she was transferred to the Children’s NICU & CICU and had open heart surgery (also with Dr. Fynn-Thompson) at 4 days old. Both of our girls have had caths and will need more open heart surgeries as they grow.

    In all of our visits to and stays at Children’s, we have been impressed not only by the amazing medical care our children have received, but also by the kindness and professionalism displayed by every employee with whom we come in contact. We are so grateful to everyone at CHB for giving our girls the chance to LIVE!

  9. My daughter underwent life saving open heart surgery at BCH when she was seven weeks old.She had AV canal, VSD and mitral valve repair.Now eleven years later her heart is doing great.Hannah recently underwent major hip surgery at BCH also.BCH is our hospital of choice for the “tough” stuff.We are four hours away, but never hesitate to travel there when we have difficult medical issues.BCH has saved my daughter’s life, and most recently provided her with a better life of no more pain.

  10. My son had to undergo a cardiac cath for critical pulmonary stenosis within the first 24 hours of his life. This procedure was performed by the ONLY doctor on staff at our local hospital that performs the pediatric cardiac caths. We had waited for a whole week to deliver the baby because the ONLY doc to do the caths was on vacation!!! And then during the procedure, this doctor that we waited for punctured my sons heart and started us on a terrible roller coaster of an 8 month long hospital stay and many many complications that have now left my boy with and uncertain future and prognosis. We just don’t know how long we have with him, and neither do his doctors. After The first failed cardiac cath, we spent 10 days in our local NICU, which I have to say, they were wonderful and skilled. But before we let that doc back in my sons damaged little heart, we had him transferred to Boston Children’s. In less than 30 minutes, what took this other doc 4 hours, leaving my son needing resuscitation and terribly, terribly ill and near death; Dr. Lock and Dr. Marshall were successful in opening up that critically stenosed valve and giving my son a chance at life. While our stays at Boston have never been without incident, His Catheterizations have Always been performed successfully even under extreme circumstances in which they can only gain access to his heart through his liver. A procedure that is not heard of in our local hospital. I know that if it were not for the very skilled and experienced interventional cardiologists at Boston Children’s, my son would have died within the first few weeks of his life. I am eternally grateful for whatever time I have been given with this little boy, and Boston Childrens is absolutely responsible for allowing us that!!

  11. Our son had a heart transplant on Oct. 31, 2009 done by the most amazing cardiac staff in the world. We could never thank all the doctors, nurses, CVICU, 8 East, and West for all the support day in and day out. We moved from North Carolina and lived in Boston from Aug. 31st to Jan. 6th so our son could be listed and wait for his brand new heart. We are so grateful for all the love we received while being so far away from our home, family and friends. Children’s Hospital gave our son another chance at life. I have nothing but good words about Children’s and never doubted any of the doctors or nurses in regards to our son’s health. We consider our team of doctors and nurses family and they will always be apart of our lives.

    Thanks to Children’s Luke is growing and enjoying life to the fullest. He is a very happy energetic little boy who melts your heart. Since transplant Luke now eats by mouth, can pull himself up and is very close to walking, and loves to by outside. Looking at him you would have no idea that he has undergone 3 open heart surgeries in just 19 months of his life.

    Thank you Childrens! God bless you all! Remember: “Always Keep the Faith”

  12. in 1985 at boston children’s my son had heart surgery. he was diagnosed with tricuspid atresia. he was under the care of drs. castanada and freed. my son is now married with a new baby. i write this to encourage young parents of children with chd and to once again thank the drs. and staff in the cardiologist dept. ( by the way it’s really strange that his wife and baby now go to his yearly appts. instead of my husband and i. kinda miss it.)

  13. We are the Warner Family from Buckhannon, WV. Our daughter was born July 3, 1997 with Truncus Arteriosus. We had 1 open heart in WV then was life-flighted to Children’s Boston. We were greeted there by a team of AMAZING Drs, one of them being Dr. Elizabeth Blume. She has been our cardiologist now for 13 years. Lacey had yet another open heart after a week in Children’s and was sent home 2 days before her 1st b-day. She had a 3rd open heart 5 years ago at Children’s. Now we make a trip from WV every year or even sometimes 2-3 times a year to recieve the medical care that our daughter needs. Children’s Hospital is the BEST! We are so thankful for them. Our daughter is now 13 yrs old and will still need 1 more open heart. Boston is worth the trip!! Would not go anywhere else!!

  14. boston childrens saved my little brothers life when he wasn’t even a day old he was born with the valves in his heart switched the valve that was to let blood with oxygen out wasn’t doing it so he wasn;t getting enough oxygen to his organs if it wasn’t for the surgery that boston childrens did i would not have my brother today. now that im pregant with my own child i have found out that im a carrier of the gene that causes this issue. if my baby is born with this there is only one place i will go boston childrens hospital

    thank you for everything you’ve done ,

    amber stanwood

  15. Our daughter Marin was born full-term and healthy, or so we thought. After hearing a murmur, she was diagnosed with 2 CHDs the day after she was born, DORV and VSD. We were in complete shock. We went to Boston and she had her open-heart surgery on Halloween of 2007, done by Dr. Mayer. The surgery was very complicated and did not go well. She came out of surgery on ECMO and bleeding severely. She was taken back to the OR twice within the next 24 hours. Thankfully he had seen her specific anatomy “once before” and knew what to do. She was on ECMO for 8 days, and chest open for two weeks. She finally came off the vent a month later. She later needed a pacemaker and feeding tube, and recurrent pacemaker surgery after the first one became infected. 2 1/2 years later she is a vibrant, smart, active two-year-old who is the light of our lives. I am so thankful we were in Boston with Dr. Mayer because I don’t know if she would have survived elsewhere. Her experience has made us the people we have become, and changed our lives so much for the better. I will always be grateful to Boston Children’s for saving her life, and bringing her back to us.

  16. Our daughter, Hope Elizabeth, now 14 months old, was born in Rhode Island, and within hours was rushed to Boston Children’s Hospital. Neither my husband, nor myself had ever heard of the CHD that she was born with.

    Hope was born, via C-section, with TGA (Transposition of the Great Arteries). We had already had one beautiful, very healthy daughter, and didn’t understand how she could be born so healthy, and only 2 and 1/2 years later, have a baby born with such a life threatening problem.

    We had absolutely no idea, until the umbilical cord was cut, that there was a problem. Hope kept turning blue, and the doctors and nurses at Kent County Memorial Hospital insisted that most likely, because she was born via C-Section, that she had fluid in her lungs and would be just fine.

    It was not until hours after that, while in recovery that my husband, my in-laws, and the pediatrician on duty came in to visit me. As soon as I saw a man who I didn’t know coming, I knew something terrible was wrong.

    He explained to me what they thought the problem was, and that Hope was going to be brought to Children’s, where she would receive the best care possible. My husband went with our new baby girl to Children’s that same day, and I followed the day after, to spend the rest of my inpatient time at Brigham and Womens Hospital.

    Thanks to Dr. Frank Pigula, and his amazing nurses and staff in the CICU at Children’s, today we are able to watch and enjoy our beautiful daughters interact, and see our oldest daughter experience what it is like to have a sibling.

    No words could ever express our gratitude!! We LOVE Children’s Hospital!!

  17. We had our little girl February 16, 2005 after 3 long days of labor. We were hoping for Valentines Day but she had other plans.

    Our little girl has a very complex congenital heart defect. She had aortic atresia with a severely hypo plastic arch. She also had an asd and a vsd. We were very lucky in the fact that she has 2 good size ventricles. Her defect was first spotted on a level two ultrasound at Boston Brigham’s and Women’s hospital. She was officially diagnosed in utero at Boston Children’s Hospital at approximately 18 wks. She had her open heart surgery in Boston at 2 days old. She has a conduit in her heart which will need to be replaced as she grows. She will need to have more open heart surgery throughout her life (which is unfortunate ….but we are thankful they CAN help her and her next surgery will not be as complicated.) She is on 2 heart medications she takes twice a day. She will most likely be on heart meds the rest of her life. She had a few bumps in her first year. She needed two heart catherizations . She also had “sludge” in her bile duct that caused cholestasis (infection ) and kept us in hospital for 2 weeks of antibiotics. The “sludge” they feel was caused by her open heart surgery.

    We are not sure when her next surgery will be however we know we are getting closer to her needing more intervention. We see our cardiologist every 4 months now she had been going every 6 months until recently. She now has an increased gradient in her out flow track and will need a catherization when this number gets to about 70. This is caused by scar tissue in her heart due to her complex Open Heart Surgery. Something that was not a surprise due too all the work her heart has needed.

    She is active five year old who attends pre-school and takes dance, swimming, ice skating, and gym. She is a special little girl and loves to make people smile. She touches the hearts of those she meets.

    We are very grateful to all the wonderful doctors and nurses at Boston Children’s Hospital without them we would not have our little girl! Children’s Hospital Boston saved her life. Dr Mayer, Dr Locke , Dr Marx and many others have taken care of her at the hospital.

    Thank you for your continued research and work in the congenital heart defect area.

    Valerie, Alan and Jacqueline

    Childrens Hospital and the Gastroenterology department also saved my life many years ago. I have first hand knowledge of how wonderful a hospital it really is


  18. Let’s not forget that Children’s Hospital Boston was ranked #1 in the country by US News and World Report for 2010-2011 in Heart and Heart Surgery.

  19. Wow! So many Truncus stories here!

    Hi! My name is Ryan Joy. I am 22 and was born with Truncus Arteriosus Type II paired with double aortic arch and single origin of the coronary vessels. I’ve had three open heart surgeries and about five heart catheterizations thus far. I was born in July 1988 and was not diagnosed with truncus until I was three weeks old. By then I was in pretty bad shape and was admitted to the CICU at Children’s Hospital Boston until I was strong enough to have my first surgery in mid October 1988. My second surgery was in June of 1995 and my third was in May of 2002.

    Other than my cardiac history, I just graduated college where I majored in biochemistry and sociology…studying to ultimately become a pediatric cardiovascular surgeon. I have played varsity field hockey as a goalie for the past 10 years, so as far as activity limitations…I have not really had many.

    This upcoming year, I will be in Boston as an AmeriCorps fellow with the Boston HealthCorps Program and am looking forward to diving into the Boston medical scene, learning more about the courageous patients and outstanding doctors who dedicate their lives to their patients and the betterment of the medical field as a whole, especially in connection with CHB.

    I am very open about my CHD and would love to talk to anyone who has been touched by truncus, or any other defect. Please feel free to contact me if you have any questions or just want to chat!

  20. Avery’s story was inspiring to read. I am a science teacher and I shared it with my students, two of them were ‘miracle’ babies themselves and survived great odds to live a good and happy life.

  21. hi my name is katelyn reasoner and i am 17..my brother died of HLHS and i am doing a report on the disease and info about it. i am trying to find info about costs and etc..anyone that could help would be my hero haha(: im a junior in highschool and the study of medicine absolutely fascinates me. please please someone help!!

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