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Nora has been diagnosed with Ventricular Septal Defect (VSD) since she was one month old. Nora has been a patient with the Children’s Heart Center at URMC since 2016 where she has received several electrocardiographs and echocardiograms. The cardiologist team has been looking into her case for years and although Nora is asymptomatic, it has been recommended to perform open heart surgery (OHS) in order to patch the VSD. Nora will receive her care through Golisano Children’s Hospital at Strong Memorial Hospital.
What is a VSD? A hole in the wall between the left and right ventricles of the heart, as a result too much blood flow may go to the lungs. (I’ve attached a link at the bottom for more information).
Why does she need surgery if she’s asymptomatic? That is a great question! Without surgery, Nora could develop symptoms later in life and could risk further complications.
Why now? Also good question! The cardiologist team told us early on, surgery would be recommended for Nora before “school age”; mostly to not disturb her social and academic life. We didn’t really know what school age meant but since Nora will be starting kindergarten in the fall, the time is now.
When is Nora’s surgery scheduled? *Update* Friday June 18th with pre-op Thursday 17th.
What does pre-op involve? Nora will have a covid test (nasally though not WAY up the nose like with adults), chest X-ray, blood work, and may need electrocardiography and/or echocardiogram.
What does the surgery involve? This is open heart surgery. Nora will be sedated with anesthesia, and her chest will be cut and her breastbone divided in order to access her heart. A heart-lung machine is used to pump blood and act as her lungs during the operation. The surgeon will patch the hole between the left and right ventricles with woven material. The heart-lung machine will be removed, and Nora’s breastbone will be put together with wires. The muscle and skin will be closed and a bandage applied. The surgery takes hours; estimated 4-6 hours.
What is recovery like? Nora will stay in Pediatric Intensive Care Unit (PICU) for as long it is needed and then will be transferred to a step down unit prior to discharge. The hospital stay varies based on patient’s need, severity of procedure, and recovery. We’ve been told a rough estimate of 3-7 days.
What is the visitor policy? Due to covid-19, there are guidelines in place. Bill and I will be able to stay with/wait for Nora in the pediatric surgery center. In PICU, Bill and I can stay with Nora from 8am-8pm and only one parent is permitted to spend the night. It’ll most likely be me spending the night but we’ll see what Nora requests.
What happens after discharge? We’ll update this section once we know more. From what I gathered, there are heavy restrictions for the first 2 weeks and lesser restrictions for about 6-8 weeks. After recovery, Nora will be followed by cardiology for the rest of her life, most likely annually. We’ve been told there are no long term effects or life changes after having VSD repair.
What do we need? Prayers, positive thoughts, good vibes, love, virtual hugs, etc. If you made it this far reading all this information, I know you truly care for Nora and what we will all be going through.
Nora saw Dr. Atallah today at SMH for her surgical follow up. She was great other than being hungry and tired and shy with the doctor. Nora definitely prefers the female staff and she gets very quiet and shy around Dr. Atallah (male doctor). There are no concerns and there was no fluid around her heart 👏 Nora will see Dr. Atallah for a 2 month follow up in October and at that appointment, we should have a better idea on how frequently Nora will have to see the cardiologist. There have been no concerns on our end with Nora’s recovery. She’s doing wonderful and you could never tell she had OHS over a month ago!
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