In February 2015, the ERHF and MUSC joined forces to provide a booklet for parents whose children have received a new diagnosis of Hypoplastic Left Heart Syndrome (HLHS). In addition to funding the project, ERHF medical advisor Dr. Sinai Zyblewski and board member Liz Lucey, PCICU R.N., provided much of the content.
The initial shock of learning your child has a heart defect often makes it difficult for parents to fully absorb the information they are given regarding their child’s treatment. With the creation of this HLHS booklet, parents can learn more about the defect, the care their child will receive, who will be taking care of their child and the support available. All this can be done outside of a doctor’s office in a more comforting way. It also provides information about who to contact as questions arise, with a goal of empowering parents.
When a child requires open heart surgery within the first week of life, it is essential that parents obtain accurate and detailed information. This booklet will provide that. Liz said of the project, “It was a clear need and thanks to the ERHF we will be continuing to create educational materials for families whose babies have other complex cardiac defects.”