Our patients’ stories: Hunter’s heart journey

By Wendy Paulin Hunter as a baby As a parent, when you look at your newborn, it’s hard not to get swept up by all the possibilities that lie ahead. Your child has the world ahead of him—you can’t help but wonder what life’s adventures have in store. That feeling of unlimited potential is why Dr. Seuss’s, “Oh, the Places You’ll Go” is such a big hit in our family, both for my four boys and myself. But when I read “Oh, the Places You’ll Go” to my youngest son, Hunter, the words took on a whole new meaning. As I read him the story and shared the bright, beautiful artwork with him, I couldn’t help but feel a knot inside when I came to the part where things don’t go as planned. As Seuss so wisely writes, “There are some, down the road between hither and yon, that can scare you so much, you won’t want to go on.” As a mother you do everything in your power to protect or guide your child away from the road Seuss describes, but in some cases you just can’t. That was very true for Hunter. Hunter gets a little laugh therapy from Boston Children's Clown Care Unit Hunter was born with a series of congenital heart defects. When he was just 3 days old he was diagnosed with coarctation of the aorta, a narrowing of the aorta that can restrict blood flow. I have vivid memories of my husband and I sitting down with a pediatric cardiologist and having him tell us that Hunter needed...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts Children's in the news Heart conditions Our patients’ stories Heart Center Jim Lock our patients' stories Pedro del Nido 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
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...
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
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
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