Our patients’ stories: Treating Haven’s pulmonary atresia

By Scott Howe Haven When Molly Foley was first pregnant, she admits she knew very little about congenital heart defects, or how they could affect her unborn daughter, Haven. But, around 20 weeks into her pregnancy, Molly discovered that heart defects were very real—and very scary—when an ultrasound revealed that Haven had pulmonary atresia. Also known as “blue baby syndrome,” pulmonary atresia is a condition in which the heart’s pulmonary valve is abnormal and doesn’t open. “It never occurs to most people that their baby could have a heart defect,” Molly says, noting that many parents are all-too aware of other potential birth defects like cleft lip/palate, Down syndrome and spina bifida. “It just doesn’t come across many people’s radar screen.” And while children born with pulmonary atresia may be rare, there is a wide range of more commonly occurring heart conditions that can affect babies. In fact, when viewed as a whole, heart defects are the number one most common type of birth defect. Following Haven’s diagnosis, Molly says that the staff at the Boston Children’s Hospital Heart Center “worked very hard to make me psychologically prepared for what was coming next.” Doctors told Molly that Haven needed a series of three surgeries—the first coming when Haven was just four days old. In addition, Haven needed to be placed on an ECMO (Extracorporeal Membrane Oxygenation)...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts Heart conditions Our patients’ stories Children's Hospital Boston Fetal Cardiology Program; Pentalogy of Cantrell; Hypoplastic left heart syndrome; congenital heart disease Heart Week treating congenital heart defects Source Type: news

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ConclusionsAn inexpensive reusable non-commercial LP simulator can be an effective method for teaching invasive procedures like LPs, especially if it can be used both for palpation and US-guided procedures. The method outlined here can be easily reproduced in a relatively short amount of time. We recognize one limitation in the widespread dissemination of this technique being access to a 3D printer and digital designs for printing. Future studies will be necessary to determine the efficacy of the homemade LP simulator in teaching neurointensivist in training.
Source: Neurocritical Care - Category: Neurology Source Type: research
CONCLUSIONS: Findings of this study reveal the IEP knowledge gaps and lack of lifestyle self-management skills AEA with SB reported pertaining to IEPs. PMID: 31744030 [PubMed - as supplied by publisher]
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
CONCLUSION: Pediatric patients with spina bifida presenting to a single center emergency department were most likely to present with shunt and urinary concerns; these patients were most likely to be admitted. This potentially suggests that improving outpatient care for bladder management may decrease emergency department use among this population. PMID: 31744029 [PubMed - as supplied by publisher]
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
Authors: Smith KA, Liu T, Freeman KA, Betz C, Clayton GH, Castillo H, Castillo J, Tu D, Speybroeck AV, Walker WO Abstract BACKGROUND: Ethnic disparities in continence rates in spina bifida (SB) have been studied regionally but not nationally. National SB Patient Registry (NSBPR) data were analyzed to explore differences in prevalence of bowel and bladder continence and interventions between Hispanics/Latinos and othersMETHODS: Participants 5 to 21 years were categorized into Hispanic/Latino and non-Hispanic/non-Latino. Bladder/bowel continence was defined as dry/no involuntary stool leakage during the day or n...
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
CONCLUSIONS: The educational intervention increased provider comfort with addressing IPV within a specialty clinical setting. The frequency of IPV communication significantly increased as compared to baseline, patients reported the discussions were beneficial, and providers reported greater comfort discussing IPV and referring patients to resources. PMID: 31744027 [PubMed - as supplied by publisher]
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
Authors: Fremion EJ, Dosa NP Abstract With an estimated 85% of individuals with spina bifida (SB) surviving into adulthood, SB-specific transition to adult healthcare guidelines are warranted to address the diverse and complex medical, adaptive, and social needs particular to this condition. This commentary discusses the SB Transition Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida, reviews current transition care models in which such guidelines can be implemented, and explores further research topics in SB transition care. ...
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
CONCLUSIONS: Children and adolescents with MM who are community ambulators, of an emerging independent age, and live in hot climates are at risk of environmental buttocks burns. Enhanced education in environmental thermal burn prevention is important. This education should be particularly focused on the child as they spend more time in settings without their parents. In addition, this enhanced education should extend to those who support the child or teen such as teachers, coaches, family and friends. PMID: 31744035 [PubMed - as supplied by publisher]
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
CONCLUSIONS: Our survey findings highlighted that SBAGA services are valued overall. The survey findings will be used to guide quality improvement of current programs, and develop programs addressing emerging needs and challenges. PMID: 31744034 [PubMed - as supplied by publisher]
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
Authors: Johnson K, Rocque B, Hopson B, Barnes K, Omoike OE, Wood D Abstract PURPOSE: The purpose of this study is to report preliminary evidence to support a new condition-specific measure of transition readiness that is theoretically grounded in the Stages of Changes framework. The Transition Readiness Assessment Questionnaire-Spina Bifida (TRAQ-SB) supplement is a newly developed tool used to measure independence and skill acquisition related to spina bifida. Similar to the Transition Readiness Assessment Questionnaire (TRAQ), the TRAQ-SB uses a 5-point Likert response set. METHODS: Working with a multi-disc...
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
CONCLUSIONS: Higher TRAQ-SB scores are negatively associated with bladder incontinence in youth with spina bifida. While stool continence and skin breakdown were not associated with TRAQ-SB scores, this relation is complex and may be obfuscated by either reporting bias or outcome measurement bias. To further refine the questionnaire and understand this relationship we need to field it prospectively in the SB network with larger samples. The TRAQ-SB questionnaire, however, does have value in the clinical setting to help promote the acquisition of specific self-management skills among youth with spina bifida. PMID: 31744...
Source: Journal of Pediatric Rehabilitation Medicine - Category: Rehabilitation Tags: J Pediatr Rehabil Med Source Type: research
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