Orchid offers advanced genetic testing for couples who want their child to have the best shot of a healthy life. “Patient and Family Stories” is where we highlight families who have been impacted by chronic conditions Orchid screens for and their perspectives on genetic screening.
Just the beginning
In October of 2020, Shaun began experiencing some of the worst headaches ever, they didn’t think much of it, and thought it could have been a virus the kids brought home from school. Over the next week, Shaun’s life was about to change forever. After multiple visits to the hospital and doctors not sure what was really going on, it wasn’t until one morning Shaun woke up blind in one eye, they rushed to the hospital. After days of tests, nothing was coming up, Shaun had no stroke-like symptoms. When doctors finally conducted an MRI, they discovered something they were not prepared for. Shaun had suffered a pulmonary embolism in his lungs. Three out of four arteries pumping blood to the brain were blocked with clots, causing an embolic shower into the brain where tiny blood clots begin to build up. Over the next few weeks Shaun’s condition began worsening, he couldn’t lift his legs, and one morning when Shaun got up to go to the bathroom he lost sight in his other eye, Shaun was now blind.
Lauren was confused as to what was happening to her husband, to the father of her beautiful children who are just 3 and 5. Shaun was placed in a hyper-care stroke unit, at this point Shaun was suffering from aphasia and was unable to communicate or form any words.
They didn’t know if he would actually make it through the next few days.
At only 39, Shaun is a fighter. Spending 6 weeks in the hyper-care stroke unit, Shaun fought hard and his condition was slowly improving. Shaun was still unable to do anything himself and had to be hoisted around. After two long months at the hospital, Shaun was ready for rehab. With some improvements Shaun was able to leave the rehab facility and go home to spend Christmas with the family.
After a Christmas with his loved ones, he was back to rehab and ready to continue working hard. But that wasn’t the case, Shaun had suffered from another stroke on January 6th, “We’re back to square one, we had come so far”.
Shaun had lost all sensation in the right side of his body, and during this stroke Shaun had a facial droop. They were back to the stroke hyper-care unit. Over the next two weeks Shaun was fighting hard for his family.
"The doctors didn’t think he would ever walk or talk if he was going to survive"
His condition improved significantly. Shaun regained sensation in his right side, and was slowly able to walk with help. After spending another month in a rehab facility, Shaun was finally able to come home to his family. Though Shaun is still blind, continuing at home therapies helped Shaun regain motion and was able to start walking using a cane, 75% of his speech was back. Coming home helped Shaun have an amazing recovery.
The light at the end of the tunnel - Shaun’s road to recovery
Shaun was seeing significant improvement that most stroke patients aren’t lucky to have. Though Shaun was physically improving, a stroke so young definitely takes a toll on you emotionally. Lauren mentions “we have moments where we have a cry and let it out, but in general he is so strong, he just wants to prove everyone wrong”.
The kids are all in on Shaun’s recovery. Lauren mentions her 5 year-old understands quite well what daddy has gone through, “he’s hurt his brain, so he goes around telling everyone my daddy is blind”. Their daughter Ava who is only 3, she doesn't quite understand the extent of the situation but she knows daddy needs help walking so she is constantly moving things out of daddy’s way, or grabbing his hand to guide him to a safe seat.
Lauren and Shaun were lucky to have an amazing support system. Her parents stepped up and moved in to help with the kids, Shaun’s parents moved in with his sister to be closer. They were all taking turns when Shaun was at the hospital, giving Lauren a break. Friends were dropping meals, taking the kids out, Lauren mentions “I don’t know how we would have got through it, if we didn’t have that”.
Family Genetics and screening for genetics
Shaun thought maybe this could be genetic since his father suffered the same sort of stroke behind his eyes at the age of 38.
When talking about having an opportunity for genetic testing and learning how their genetics can impact their child’s health, Lauren said it would be something definitely to consider. “Having two children, it's something I want to know and have available”. She believes having the knowledge can help understand and prepare for certain risks, and try to implement a healthier lifestyle if you are aware of certain risks.
If you would like to learn more about Shaun's journey, you can follow their journey through their facebook page.