1. Sobrino-Bonilla, Yusimi BSN, RNC

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Thank you for your interest and concern over CS and her husband. They are truly an amazing family!! At the time that CS came to us, her husband was the main caregiver. He had the help and support of his mother and mother-in-law but no other outside help. He was able to work from home and had one of the mothers stay with CS when he had to go out. Care for CS and their 4-year-old daughter was mainly the husband's responsibility. Physical therapy had stopped coming for what he recalls as insurance reasons. CS could not walk and he would "carry" her around the house. She was completely dependent for all of her activities of daily living.


There was concern over CS's labor since there was not much documentation available about possible outcomes. A literature search by the perinatologists had revealed limited research and information. Several scenarios had been reviewed with them. One of their biggest concerns was the risk of intubation and the possibility of permanent ventilatory support. They were very happy and relieved when her labor proved to be uneventful.


CS's husband was very involved in her labor, delivery, and postpartum care. She could not verbalize but could nod to yes and no questions. She would attempt to speak, and it would be garbled. He understood some of her speech, inflections, and overall needs best of all. He remained at her bedside through the labor and delivery experience and was able to relay her needs to us. He stayed with her in the postpartum room and helped her breast feed because it was something she wanted to do.


Part of the reason I pursued writing this paper was the impact that this family's dynamics and positive spirit had on me. He was very dedicated to her and was doing the best he could under very strenuous circumstances. They did eventually receive some of the much-needed help from physical therapy and home care.


I have followed them on and off over the past 3 years, and, unfortunately, about a year ago, she had respiratory compromise requiring a tracheotomy and ventilatory support. CS still lives at home and remains an integral part of their family life. The happy ending for this family lies in the resilience of an unrelenting spirit.


Yusimi Sobrino-Bonilla, BSN, RNC