The experience of parents with children with myelomeningocele who underwent prenatal surgery

Issue title: Spina Bifida Care Among a Global Community

Guest editors: Jonathan Castillo

Article type: Research Article

Authors: Antiel, Ryan M.^a | Janvier, Annie^b | Feudtner, Chris^c | Blaine, Kallie^d | Fry, Jessica^e | Howell, Lori J.^f | Houtrow, Amy J.^{g; *}

Affiliations: [a] Department of Surgery, Mayo Clinic, Rochester, MN, USA | [b] Department of Pediatrics and Clinical Ethics, University of Montreal, Neonatology, Clinical Ethics, Palliative Care, Sainte-Justine Hospital, and Sainte-Justine Hospital Research Center, Montreal, QC, Canada | [c] Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA | [d] Minneapolis, MN, USA | [e] Department of Pediatrics, Northwestern University Feinberg School of Medicine, and Division of Neonatology, Ann and Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA | [f] Center for Fetal Diagnosis and Treatment, Children’s Hospital of Philadelphia, Philadelphia, PA, USA | [g] Department of Physical Medicine and Rehabilitation, University of Pittsburgh, Pittsburgh, PA, USA

Correspondence: [*] Corresponding author: Amy J. Houtrow, Department of Physical Medicine and Rehabilitation, University of Pittsburgh, 4401 Penn Avenue, Pittsburgh, PA 15224, USA. E-mail: [email protected].

Abstract: BACKGROUND: Prenatal surgery for myelomeningocele (MMC) has been demonstrated to have benefits over postnatal surgery. Nevertheless, prenatal surgery requires a significant emotional, physical, and financial commitment from the entire family. METHODS: Mixed methods study of parents’ perceptions regarding provider communication, treatment choices, and the family impact of having a child with MMC. RESULTS: Parents of children with MMC (n= 109) completed questionnaires. Parents were well informed and reported gathering information about prenatal surgery from a wide range of sources. After a fetal diagnosis of MMC, most learned about their options from their obstetrician, although one-third were not told about the option of prenatal surgery. About one-fourth of these parents felt pressure to undergo one particular option. Half of parents said that having a child with MMC has had a positive impact on them and their family, while the other half indicated that having a child with MMC has had both positive and negative impacts. The most commonly noted positive impacts were changes in parental attitudes, as well as having new opportunities and relationships. The most frequently reported negative impacts concerned relational and financial strain. The vast majority of parents indicated that they would still undergo prenatal surgery if they could travel back in time with their present knowledge. CONCLUSIONS: A better understanding of the parental experiences and perspectives following prenatal surgery will play an important role in providing overall support for parents and family members.

Keywords: Myelomeningocele, prenatal diagnosis, maternal-fetal surgery, parental decision-making, parental perspectives, clinical ethics, family impact

DOI: 10.3233/PRM-170483

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 11, no. 4, pp. 217-225, 2018