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STARS Patient Information

Ben's Story

When our third son, Ben was 4 months old, he accidently received a bump to his head. He cried like I have never hearda baby cry before and became very stiff and pale. He then went unconscious for what felt like an eternity (in reality was 30 seconds). I was extremely panicked and I thought he had died. My older boys got the phone so I could call 911. While I was on hold with 911, Ben came back around. I rushed him to the hospital not knowing what had just happened. At the hospital Ben was happy and smiling. The ER made me feel as if I did not know what happened; they told me there is no way he got stiff then went unconscious and that I must have been mistaken. I was left feeling very uneasy about what just happened to my son. That was the worst day ever and I will never forget how horrifying it was for me and my family.

This was just the beginning of our journey with Ben’s condition. Our paediatrician has diagnosed Ben with having pallid breath holding spells (BHS) which in Canada are the same as Reflex Anoxic Seizures (RAS). He told me that although they are not life threatening, these spells are terrifying to witness. After many sleepless nights searching and researching, I was confident that Ben does have pallid BHS/ RAS. Ben’s spells increased to daily and sometimes multiple times a day. It has changed how we parent. I was never a helicopter parent to our other boys but it is extremely hard not to be with Ben. I never wanted him to get hurt or scared. To date, Ben has visited our family doctor, our paediatrician and a neurologist and has had an EKG, EEG and other bloodwork done to rule out other causes for his condition. All tests came back normal, so we have accepted this and make the most of every day. 

It has been over a year since Ben’s first BHS/ RAS spell and I can tell you it does get easier to manage. I created a support group on Facebook that has over 100 parents who share our common experiences. This has helped me deal with my emotions and I have found it is comforting to talk to other parents who understand. I hope that together we can raise awareness, provide education and above all support each other through this journey. Thank you to STARS for all their helpful information. The "Jack has RAS" booklet is great for explaining it to our other boys. The information sheets are helpful to give to our daycare as well. The staff at STARS are very educated and helpful. I am so thankful I found them.

As a mother this was the worst thing that I have ever had to deal/cope with. I felt so alone and scared as there are not many doctors who are confident with BHS/ RAS. You are not alone! Thanks again to STARS for making it that much easier to deal with. Lindsay Canada


Get in touch for more help and information

+44 (0) 1789 867 503info@stars.org.uk

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