Commitment to Breastfeeding in the Context of Phenylketonuria

Banta-Wright, Sandra A.; Kodadek, Sheila M.; Houck, Gail M.; Steiner, Robert D.; Knafl, Kathleen A.

doi:10.1111/1552-6909.12750

Cited by 9 publications

(18 citation statements)

References 31 publications

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“…Infant conditions generally caused hypotonia, somnolence and poor weight gain in a cluster or drove a need for feeding adaptations such as frequent short feeds and strategies to increase calories to manage fatigue and growth problems. Banta‐Wright et al (2015) was the exception to the previously mentioned adaptations to feeding. In their study, they found that mothers had to be constantly flexible, in response to their child's phenylalanine (Phe) levels, not because of their infant's tone or somnolence, but because of their underlying metabolic condition.…”

Section: Resultsmentioning

confidence: 96%

“…A total of nine papers commented that lack of specialist lactation support made breastfeeding harder. For example, Banta‐Wright et al (2015) found that although there were designated International Board Certified Lactation Consultants (IBCLCs) in the neonatal unit, they were not employed in paediatrics. One study participant telephoned every IBCLC she knew to ask for information and managed through this convoluted route to get the help she needed.…”

Section: Resultsmentioning

confidence: 99%

“…In the Ryan et al (2013) study, mothers highlighted various gaps in knowledge. Banta‐Wright et al (2015) found that parents had to be creative, finding their own breastfeeding support or utilizing peer and family support.…”

Section: Resultsmentioning

confidence: 99%

“…Although nearly all the parents required specialized equipment, access to such products was not always universal and support was weak. The participants in the Duhn and Burke (1998), Lewis and Kritzinger (2004), Banta‐Wright et al (2015) and Barros da Silva et al (2019) studies variously used breast pumps, bottles, nasogastric tube (NGT), gastrostomy tube (GT) and syringes but did not in general find adequate support to help them with their breastfeeding journeys. Lambert and Watters (1998) identified lack of privacy, lack of access to pumps and inconsistent advice as barriers.…”

Section: Resultsmentioning

confidence: 99%

“…Mothers were therefore left dealing with the complications of this on top of the practical complications of ensuring their infant received the milk. However, mothers feel a desire to persevere with expressing, describing it as a labour of love (Banta-Wright et al, 2015).…”

Section: The Practical Impact Of Infant Hospitalization On the Parentmentioning

confidence: 99%

See 4 more Smart Citations

The challenges of medically complex breastfed children and their families: A systematic review

Hookway

Lewis

Brown

2021

Maternal & Child Nutrition

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Exclusive breastfeeding for the first 6 months and then alongside solid food for the first 2 years and beyond is the gold standard in young child nutrition. There is an abundance of literature relating to the preventative nature of breastmilk and breastfeeding against many infectious diseases and chronic conditions. However, despite medically complex infants and children being a group that could benefit most from continued breastfeeding, breastfeeding duration and exclusivity are lower among more complex paediatric populations. The reasons for this are not well known, and there is a paucity of data relating to supporting infants who have acute or chronic illness, disability or congenital anomaly to breastfeed. This systematic review aimed to understand the challenges of breast/chestfeeding the medically complex child and to establish the gaps in healthcare provision that act as barriers to optimal infant and young child feeding. The search was limited to studies published in English, focused on breastfed sick infants in hospital, with no date limits as there is no previous systematic review. Of 786 papers retrieved, 11 studies were included for review, and seven themes identified. Themes included practical and psychological

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Section: Resultsmentioning

confidence: 96%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: The Practical Impact Of Infant Hospitalization On the Parentmentioning

confidence: 99%

See 3 more Smart Citations

The challenges of medically complex breastfed children and their families: A systematic review

Hookway

Lewis

Brown

2021

Maternal & Child Nutrition

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Breastfeeding in infants diagnosed with phenylketonuria

Chong

Kalvala

Chadborn

et al. 2022

Cochrane Database of Systematic Reviews

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Aminoacidopathies: Prevalence, Etiology, Screening, and Treatment Options

et al. 2017

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Inborn errors of metabolism (IEMs) are a group of inherited metabolic disorders which are caused by mutations in the specific genes that lead to impaired proteins or enzymes production. Different metabolic pathways are perturbed due to the deficiency or lack of enzymes. To date, more than 500 IEMs have been reported with most of them being untreatable. However, fortunately 91 such disorders are potentially treatable, if diagnosed at an earlier stage of life. IEMs have been classified into different categories and one class of IEMs, characterized by the physiological disturbances of amino acids is called as aminoacidopathies. Out of 91 treatable IEM, thirteen disorders are amino acid related. Aminoacidopathies can be detected by chromatography and mass spectrometry based analytical techniques (e.g., HPLC, GC-MS, LC-MS/MS) for amino acid level changes, and through genetic assays (e.g., PCR, TaqMan Genotyping, DNA sequencing) at the mutation level in the corresponding genes. Hence, this review is focused to describe thirteen common aminoacidopathies namely: Phenylketonuria (PKU), Maple Syrup Urine Disease (MSUD), Homocystinuria/Methylene Tetrahydrofolate Reductase (MTHFR) deficiency, Tyrosinemia type II, Citrullinemia type I and type II, Argininosuccinic aciduria, Carbamoyl Phosphate Synthetase I (CPS) deficiency, Argininemia (arginase deficiency), Hyperornithinemia-Hyperammonemia-Homocitrullinuria (HHH) syndrome, N-Acetylglutamate Synthase (NAGS) deficiency, Ornithine Transcarbamylase (OTC) deficiency, and Pyruvate Dehydrogenase (PDH) complex deficiency. Furthermore, the etiology, prevalence and commonly used analytical techniques for screening of aminoacidopathies are briefly described. This information would be helpful to researchers and clinicians especially from developing countries to initiate newborn screening programs for aminoacidopathies.

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Commitment to Breastfeeding in the Context of Phenylketonuria

Abstract: Findings demonstrate the importance mothers attribute to breastfeeding and their willingness to invest considerable effort to breastfeed. Health care providers working with these mothers should help them strategize for success.

Cited by 9 publications

References 31 publications

The challenges of medically complex breastfed children and their families: A systematic review

The challenges of medically complex breastfed children and their families: A systematic review

Breastfeeding in infants diagnosed with phenylketonuria

Aminoacidopathies: Prevalence, Etiology, Screening, and Treatment Options

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