Raising A Child With Hemophilia

By: Laura Jimenez - Parent of a Child with Hemophilia

My name is Laura Jimenez and I’ve been asked to share my experience as a mother of a boy with a bleeding condition, my son Albert has Hemophilia A, severe. This is the first time that I’ve written something like this.

I would like to start by sharing that I came to this country in search of a better future and this is where I met my husband Alberto Jimenez. From the moment I found out I was pregnant with our first child, I was scared that I was going to have a boy. I gave birth to a beautiful baby girl, Jessica, and I was very happy and enjoyed her a lot. However, she was very lonely and wanted a brother or sister, so my husband and I decided to have another child.

In May I found out I was pregnant, and from that moment, the fear that I would have a boy took over me again. The simple fact that the baby could be a boy and that he could have Hemophilia frightened me. During my childhood I had seen my brother and my uncle suffer with this condition. Maybe my fear was not for him, but for me. Because even though I had seen others in my family living with Hemophilia as I was growing up, I did not live through it with them. I realized then that I had ignored everything having to do with Hemophilia while growing up around it.

Through an ultrasound we discovered that I was going to give birth to a boy. From that moment on, my anguish was greater, my fear had been confirmed and on many occasions it nearly drove me to craziness. Fortunately my daughter was in Mexico at the time. I spoke to my family more often at that time than I had since I had moved to this country. Nevertheless, nothing that they could tell me would calm me down.

On March 8th 2001, Albert was born and two months later my terrible suspicions were confirmed when his doctor told us Albert had Type A Hemophilia, severe. At that moment I felt like I was going to collapse!!!!!!!! This time, when talking to my family I realized that I was not alone. My grandma, my mother, and my sister were able to do it, and I knew I needed to face this with courage and all the love I had for my child. And that’s how I started on the path to bring my son the chance for a better quality of life.

During the nights when my husband and my children were sleeping, I would admire Albert while he slept. I would look at him, so defenseless, and I would think of so many things that I can’t even explain. But it was then that I understood that God does not make mistakes, and that he would not send me one of his angels who is sick, unless God was sure that he would be strong enough.

In Mexico, the hospitals don’t have the factor or the goods that we have here; for obvious reasons, many people can’t work in institutions that offer insurance and they find themselves dying slowly, with the agony of no medical attention. This is the case of my brother and my uncle, who were in the hands of agencies without the appropriate medicine and in the hands of neglectful doctors with no ethics. Recently, I was talking to my brother who told me that he “would rather suffer the pain”, since his biggest fear is that he could get infected with something like AIDS.

There are moments when I question whether I am doing the best thing for my son. One of the biggest dilemmas I have faced has been whether or not to have a port surgically placed to help with infusions. I know that I am only scared because of lack of information. It has been difficult for me to confront all of this, since I see myself fall all the time, but without collapsing!!!!!!!!!! During this time, I have come to rely on the support of my family and the Hemophilia Foundation. I educate myself through different Hemophilia publications and learn a lot from the experiences of my family, which are too long to tell.

The most difficult part of all of this is that it has affected my husband and my daughter, two lives for whom this has not been as easy to accept. Because all of this is very new to them, sometimes they don’t understand my concerns and mood changes. At times we may not agree with each other or be the best of friends, but I hope they understand that we have all become victims of fear that Albert might fall, get hurt or that someone will hit him and that is why we frantically jump every time.

I believe that time and the love that we have for Albert will help them get to the point where I am at right now, to understand that our angel will change the path in our lives for the better. For all of this and more, I want to take this opportunity to ask my family for forgiveness for all the times that I might have offended them.

I would also like to tell all the families with special people like Albert not to give up, but instead, to take a moment to thank God, and ask him to give us all strength to support them. This way we can leave in our paths something better for those that are forthcoming.