Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

By Emily Boyer

I remember the days that followed Logan鈥檚 diagnosis in snapshots. I remember some things very vividly and other things I wouldn鈥檛 remember if I was shown a videotape. It all came together on one big twisted rollercoaster. One thing I do remember is the hematology team assuring us, almost confidently, that Logan鈥檚 hemophilia was due to a random mutation and not from genetics. There is no hemophilia to speak of in my family and an in-depth search into the record books came up with the same conclusion 鈥 nothing.

Emly_newbornLoganA clear memory though, is nine months after Logan was born in January, when my phone rang and 鈥淐hildren鈥檚鈥 popped up on the screen. I was in the car with a co-worker getting coffee.

I answered the phone, 鈥淗ello.鈥

鈥淚s this Emily?鈥 asked the genetic counselor.

鈥淵es,鈥 I said cautiously.

All I heard after that was 鈥淚 have your test results. Do you have a moment?鈥

I quickly responded, 鈥淣o, I am busy. I am sorry.鈥

She stammered over her words, not expecting to get a 鈥渘o鈥 from me, saying something about calling her when I had a few moments to go over the test results about my carrier status.

There it was. That was the diagnosis I never expected to get. No family history; it had to be a random mutation. It had to be.

Later that day a room full of people: hematology nurse, nurse practitioner, social worker, a doctor and a resident medical student, made it official. I carry the hemophilia gene.

Prior to that day in January when people would ask, 鈥淗ow did Logan get hemophilia?鈥 I could say with confidence that it was a random mutation. I could not say that any more. My default was to avoid the topic. Often times, people do not know what hemophilia is, let alone how you get it. So most people would not ask.聽 But then there were the people that followed up the initial questions with 鈥淗ow did he get it? Is it genetic? What are your chances of having another one with hemophilia?鈥

It is genetic, I would explain. Women, like me, carry the gene.聽 聽Genetically speaking, if I were to have another baby boy, he would have a 50/50 chance of having severe hemophilia.聽 This whole speech was quite rehearsed and without emotion.

I have experienced a handful of weird, funny and inappropriate comments about Logan鈥檚 hemophilia, but nothing would have prepared me for the comments that sometimes flow out of people鈥檚 mouth about my carrier status.

鈥淚 guess you are off the hook for having more kids.鈥

鈥淣o more kids for you!鈥

鈥淎t least you know now instead of after you have another with hemophilia. That would really suck for you.鈥

鈥淎re you getting your tubes tied or is your husband getting things snipped?鈥

鈥淎t least you could adopt. 鈥 (The thought of adoption is a wonderful idea, but not in the way they were trying to use.)

鈥淎re you going to have more kids?鈥

鈥淲ith medical advancements, I wonder if you can wait, like ten years, and they could cure the hemophilia while you are pregnant.鈥

The comments ranged from curious and trying to be helpful, to hurtful and completely invasive. I felt like people鈥檚 knowledge of my carrier status gave them an open door into my family鈥檚 reproductive decisions. Their comments made me think that, had I been aware of my carrier status, these individuals would have advised me to never have children.

Yet, what most of these people did not know was that my carrier status and Logan鈥檚 hemophilia had me fraught with guilt – guilt over the multiple surgeries, daily infusions, hours spent in doctors鈥 offices and the dreaded inhibitor. I tried to remember that I had no control over the genetic testing outcome, but this guilt was often relived when I had to explain to one more curious person that Logan鈥檚 hemophilia was the result of my genes over its outcome. Those comments and questions often time illuminated the deeply held shame and guilt that I still experience.

We live in a world where things don鈥檛 go accordingly to plan. Hemophilia wasn鈥檛 a part of my plan, it wasn鈥檛 a part of my family鈥檚 plan, and my carrier status certainly wasn鈥檛 on anyone鈥檚 plan, but it also allowed me a new level of appreciation that I am not controlled by the opinion or thoughts of others. Being a carrier was an incredibly painful realization but I don鈥檛 want to be defined by it. I want to take the precious life I have and live it in spite of my status.

Regardless of my carrier status, if Logan is my only blessing or I am blessed with more, I can say with confidence, genetics aside, that my life and my child(ren)鈥檚 lives does not rest in the opinions of other people or the new medical information stored in my file.聽 Sometimes it is so easy to get wrapped up in the genetics and the exhausting hours spent on factor that I forget to remember how grateful I am that Logan is a part of my life and that hemophilia is just one part of his life.聽 While I would like to spare him some of the challenges he will face living with a bleeding disorder, it鈥檚 hard to say that there鈥檚 anything about him I would change.聽 To me, he is perfect just the way he is.

Emily Boyer lives with her husband, Geoff, and 2 year old son, Logan, in Minnesota.

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

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