“There is a tremendous amount of guilt as a mother knowing that I had passed this disease on to Robbie.”

We are the Reid family and we have a wonderful 5-year-old boy living with Severe Hemophilia Type A.

 

My son Robbie was born and with no family history of hemophilia and with very little knowledge of the subject, we had no reason to suspect that this would be something we would be living with.

 

In hindsight there were clues prior to his diagnosis that something was wrong.

 

Robbie had to have his tongue clipped when he was just days old and he suffered from prolonged bleeding, as well as countless bumps and bruises, even as a small infant.

 

I remember talking to the doctor as he continued to develop very large hematomas, some from being picked up under his arms, from the straps on his car seat and even his bathtub. After having a bath and developing a very concerning dark bruise on his bottom we took him again to his pediatrician. She told us to be prepared – that we may be contacted by children’s services due to the nature of the bruising on just an 8-month-old baby. Blood tests were also ordered. Not getting any news, we received a second request to go into the hospital for additional tests to be done. We were so worried about what was happening with our sweet little guy.

 

Getting the results, we were called into Hematology and Oncology at the hospital and were told that it would be a long visit. Sitting down with Robbie’s Hematologist that first day was one of the toughest days we have ever had. Learning of Robbie’s diagnosis, how to care for him, and just taking in how our lives would be changing.

 

Later through DNA testing it was confirmed that I was a carrier and had passed along this disorder to Robbie. There is a tremendous amount of guilt as a mother knowing that I had passed this disease on to Robbie and the pain and challenges he would encounter. We were still unsure of exactly how his life would be impacted and did not know how to best support him.

 

We have been extremely lucky to receive great care through McMaster in Hamilton with a fantastic team including Robbie’s Hematologist, Nurse, Physiotherapist and Social Worker. They have helped us navigate learning how to recognize a bleed, providing Robbie’s prophylaxis treatment and provided care during some of our scariest moments during the bleeding episodes that have occurred.

 

Education and finding community have been have aided our family and my son through this journey from diagnosis to today where Robbie is thriving with his current prophylaxis schedule.

 

There are still so many obstacles that we are working through like understanding all of the medical options available to Robbie, the transitions from daycare to school and as he gets older. We want to ensure that he is afforded all of the opportunities he deserves. As a mother and as a carrier, I continue managing risks as we grow our family, and try to be a strong supporter, both emotionally and mentally, for our boy.

 

We are hopeful for the continued research and options made available for all of those living with a bleeding disorder and have been proud to participate in studies and community working towards the goal of a cure.