Life with congenital heart disease: Looking back with gratitude, looking ahead with hope

Jennifer D’Ercole McKenna, 49, is a patient pioneer — part of a small but growing group of middle-age adults with congenital heart disease who had surgical repair in infancy or early childhood. “It’s hard for doctors to answer questions about how long I’m going to live. I ask, ‘Will I live until my 80s?’ and their response is, ‘That’s our goal.’” In 1966, the average life expectancy for someone with Jennifer’s diagnosis, Ebstein’s anomaly, was 37 years (39 for females and 33 for males). Jennifer shares her lifetime of wisdom with parents and children affected by congenital heart disease. Stay active and chase your dreams “I loved taking ballet and gymnastics classes as a child,” she remembers. “Kids with heart conditions can love physical sports or arts and shouldn’t be limited or discouraged from pursuing them. I wasn’t an athlete, but who’s to say I would have been if I had a perfectly healthy heart? You do what you can handle and it becomes part of your personality.” Be intentional about your health   Congenital coincidences In her 20s, Jennifer volunteered at Boston Children’s. Whenever she mentioned to the volunteer coordinator that she had congenital heart disease, she was sent to the cardiac floor. One day, Jennifer was rocking a baby and learned he had the same congenital heart defect as her — Ebstein’s. “He looked...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories BACH congenital heart disease Dr. Keri Shafer Dr. Michael Landzberg Dr. Sitaram Emani Source Type: news

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Conclusions: The study ’s findings support the efficacy of tube weaning based on the published “Graz model of tube weaning” for children born with EA/TEF and indicate the necessity of specialized tube weaning programs for these patients.What is Known:• Children with esophageal atresia/tracheoesophageal fistula often suffer from feeding problems and tube dependency.• Different tube weaning programs and outcomes have been published, but not specifically for children with EA.What is New:• Evaluation of a large sample of children referred for tube weaning after EA repair.• Most children wi...
Source: European Journal of Pediatrics - Category: Pediatrics Source Type: research
Publication date: December 2020Source: Journal of Functional Foods, Volume 75Author(s): Jian Zhang, Xiaohang Fu, Wenhui Li, He Li, Zhiwei Ying, Xinqi Liu, Liduan Yin
Source: Journal of Functional Foods - Category: Nutrition Source Type: research
Authors: Ebrahimi-Zadehlou P, Najafpour A, Mohammadi R Abstract PURPOSE: It is compulsory to make a tension-free, end-to-end repair in transected injuries. However, when it comes to longer defects, placement of an autograft or nerve conduits is required. The present study was designed to assess regenerative potential of silymarin nanoparticles loaded into chitosan conduit on peripheral nerve regeneration in a transected sciatic nerve model in rat. METHODS: In NML group left sciatic nerve was exposed through a gluteal muscle incision and after careful hemostasis skin was closed. In TSC group left sciatic nerve w...
Source: Neurological Research - Category: Neurology Tags: Neurol Res Source Type: research
AbstractBackgroundTo repair a blow-out fracture, the endonasal approach is indicated when the center of the fracture occurs in the orbital floor medial to the infraorbital nerve, or when the orbital tissue is herniated inwards; additionally, the combined endonasal and transmaxillary approach is indicated for fractures of the anterior and lateral parts of the orbital floor.Method and conclusionThe use of endoscopic modified medial maxillectomy and special instruments enabled the surgeon to repair an outwardly herniated blow-out fracture by the endonasal approach alone, despite the center of the fracture being in the orbital...
Source: European Archives of Oto-Rhino-Laryngology - Category: ENT & OMF Source Type: research
ConclusionHigh rates of detection are mainly due to low rates of referral when indicated and possibly parental anxiety about a CHD diagnosis.
Source: Journal of the Saudi Heart Association - Category: Cardiology Source Type: research
One in 100 babies is born with some form of congenital heart defect (CHD).  Sometimes the issue is minor and doesn’t cause serious problems. Other times, the heart can’t function properly and needs immediate, invasive surgery. As kids with CHD grow up, they learn their condition will follow them for life and need continued attention. Every CHD heart is unique, but some experiences are universal, and kids and families can help support one another through challenging times. The Heart Experience Journal, created by the Department of Psychiatry and the Heart Center, represents the “collective wisdo...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Experience Journal atrial septal defect congenital heart defect congenital heart disease Heart Center Source Type: news
Conclusions Better diet quality is associated with a reduced occurrence of some conotruncal and septal heart defects. This finding suggests that a reduction in certain cardiac malformations may be an additional benefit of improved maternal diet quality, reinforcing current preconception care recommendations.
Source: Archives of Disease in Childhood - Fetal and Neonatal Edition - Category: Perinatology & Neonatology Authors: Tags: Epidemiologic studies, Press releases, Congenital heart disease, Childhood nutrition, Diet, Pregnancy, Reproductive medicine, Childhood nutrition (paediatrics), Child health, Infant health, Infant nutrition (including breastfeeding) Original articles Source Type: research
Growing up with pioneering treatment is the latest What your patient is thinking piece from The BMJ. It is written by Liza Morton who was the world's first 11 day old baby with congestive heart failure to be attached to an external cardiac pacemaker for complete heart block. She was fitted with five early implantable pacemakers  by thoracotomy before age 7, she had surgical repair of her atrial septal defect and her first variable rate pacemaker in her early teens, and four further variable rate pacemakers. She describes her childhood memories of being treated for congenital h...
Source: Doc2Doc BMJ Cardiology - Category: Cardiology Authors: Source Type: forums
Finding out your child has congenital heart disease (CHD) can send you on an emotional roller coaster. “You can’t help but think, is this my fault? What did I do wrong?” says Jessica Nigrelli, whose daughter Avery was diagnosed with CHD when she was 16 months old. When Avery was a baby, she had an on-again, off-again heart murmur that was checked every three months. When the murmur persisted at 16 months, her primary care doctor recommended she see a cardiologist from Boston Children’s Hospital. At the Heart Center’s outpatient clinic in Waltham, Dr. Susan Saleeb discovered Avery’s atria...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Heart conditions cardiac surgery congenital heart disease Heart Center Source Type: news
It’s a Saturday afternoon at Fist Fitness, a boxing gym in Westford, Mass. co-owned by Joe Bellone and Sean Eklund, nephew of the famous “Irish Micky Ward.” A patron enters, slightly tired from a morning 5K run, but ready for another solid workout. It’s been a few months since she’s trained at the gym, but she remembers all of the motions: left, right, 1-2-3, uppercut–she’s in the zone. Her trainer, Eklund, kneels down to get to her eye level. Twelve-year old Hayden is just under 54” tall. Hayden Schenck is not your average sixth grader. She has a zest for adventure, a love o...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our patients’ stories congenital heart defect congenital heart disease Heart Center Source Type: news
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