Parenting a child with inhibitors on daily basis
My name is Teresa Pereira. I am a mother of two little boys, 11 and 3 years old. They both have severe haemophilia A with inhibitors. We are Portuguese and live near Lisbon. The haemophilia diagnosis was a surprise to our family. Although it was found out later that I am a carrier, until the first severe bleeding of my oldest son I never suspected being affected by any bleeding disorder myself.
Taking care of two children with haemophilia and inhibitors is not an easy task! It is common to be okay in the evening before going to sleep and to wake up the next morning with a bleed, making it necessary to go to the hospital for treatment. We have already spent Christmas, birthdays, Easters… at the hospital! We must always have a Plan B for all the tasks and activities. Even on a professional level. It is often that I to have to inform my boss that I can not attend a planned meeting, or perform a scheduled task because I have to stay home and provide assistance to my family. It is important to be able to work in a place that gives us a chance to be flexible. Nowadays there are many tasks that we can do from home. We just need a phone, a computer and internet!
The fact that we can not follow an effective prophylaxis scheme as the hemophiliacs without inhibitors do, makes everything more difficult. However, for our oldest son we performed a prophylaxis scheme 3 times per week with FVIIa. Although it was not very useful for the major bleeding situations, it did prove effective in preventing hemarthroses, and therefore, effective in protecting the joints. My youngest son is too young and still has small veins, and does not have a central catheter, therefore he just takes FVIIa on demand.
As our children grow, they will learn and understand better what they can or can not do. While they are in the elementary school is our responsibility as the parents to try to control their activities and ensure safety. However, when they reach high school, we have to let them have their own choices and decisions about their safety. We might stand, help them learn, provide the educational material or encourage to get more actively involved in the haemophilia society, but the active learning part is theirs. We must let them grow, no matter how hard it may be for us!
Both my sons practice swimming. It strengthens their joints, while they are doing a sports activity! Having an active life is very important for people with haemophilia (and inhibitors) and we should promote it. It is important not only for their integration in society and feeling equal to all others, but also for the physical benefits.
Like I said in the beginning, being a parent of a child(ren) with hemophilia and inhibitors is not an easy task. However, the science is evolving rapidly! New hopes are coming. Also, the fact that home treatment is available in our situation is a big help! It allows to treat the bleeds much sooner and more easily, with less pain involved. This also helps to avoid the frequent travels to the hospital. We get so much more quality of life!
Please share your experiences as a parent of a child with inhibitors, it may help someone in their situation!