Experience with the Irish Haemophilia Society – A Parent\’s Perspective

As a new parent you expect that it will be a new learning experience, even if this baby is not your first. This was the case of our family. Our son was born thirteen months after our daughter much to our joy. We had no reason to believe that all would not be rosy in the garden. That is until he was in his eighteenth month and eager to be mobile, as most boys are at that age. Our son had a tendency to use his head as a landing ground for his standing attempts resulting in a Cyclops appearance. This did alarm us, but he was alert, and none of his personality changed after the initial head trauma. It took approximately two weeks for the bump to subside, a fact I registered to my own slow healing. When he repeated the head trauma and the healing again took a long time, we decided that a trip to the GP was called for, resulting in a trip to Our Lady’s Hospital Children’s Hospital Crumlin and a diagnosis of severe Haemophilia A, factor VIII deficiency.

We had no prior family history of haemophilia, so it became a steep learning curve. The haemophilia team did inform us early of the Irish Haemophilia Society, only I could not see what Barretstown trips and AGM weekends had to do with my son’s condition. I was too busy trying to fix my baby and deal with the guilt of bringing this condition into my family. I did attend one meeting at the start in St. James’s Hospital about prophylaxis as it was important information for my child’s future. The staff and members were very friendly, but I was not in a place where I could function in a group, I had a fear of becoming a warrior mum bent on fighting for her child. I didn’t see how the IHS could help me.

I was very wrong, we had a setback where our son developed inhibitors, we were really scared and if we had become involved with the IHS earlier, I do feel that time would have been a gentler experience.  The help from people in the Irish Haemophilia Society, people with similar past experiences, people who know what your worries are, may have helped ease some of our worries with their own experience, or would help us find resources to get the information needed.

In 2009, the IHS introduced a Parent’s Conference. We felt that the seminars would be of benefit to us so we made the decision to attend the conference and we headed to Ashbourne. We were very nervous attending the weekend as we did not know anyone, but the staff and volunteers of the Society made us feel really welcome. Both our children were in the crèche and it was led by a lady volunteer of the IHS who made a real difference to our life. She discovered that our son was not aware that other little boys had haemophilia and proceeded, to the wonder and delight of our son and daughter, to introduce our son to all the boys with haemophilia including some of the staff and volunteers, young men with the same complaint as our son. This is where he realized that he was not alone with haemophilia. This move alone brought about a confidence in our son and a stronger identity.

Both our children made some really good friends. Our son met a boy the same age as him and with the same condition. He also had a sister who became great friends with our daughter. The relationships formed on that weekend alone have been of such benefit to our family, we now all look forward to the weekends as a time to meet up. The girls have each other to talk to about how they feel being a sibling of a brother with haemophilia, the boys have each other to relate to on how they are dealing with haemophilia and I have to say they have learned a lot from each other. I also have met some incredible people at the Irish Haemophilia Society weekends, and from each meeting I have taken something back which I have used in my life.

My initial belief of the Irish Haemophilia Society did not prove true, I was not required to be the warrior mother I first thought. Rather it is a portal for help, advice, and a meeting of minds on the future of people with this particular complaint. We are very lucky to have such a resource, I am only sorry I didn’t realise it sooner.

When you are breaking into a new group it is always hard, but the Irish Haemophilia Society is the exception, you just need to be a member. Everyone is in the same boat and it is the wish we share, to improve our child, partner or parent’s life, that drives us. There is a wealth of information and life experience between us and people want to share it with you, people don’t want you to have to go through it alone, as it is a busy enough road as a carer. If I was to finish with a parting thought it would be get involved sooner rather than later, we are sorry we didn’t.

Lorraine O’Connor
Member of the Irish Haemophilia Society