My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we finally decided to expand our family. Our daughter was 7 years old and we were ready to complete our family with a little boy. I did not know if I was a carrier or not at that point, but, as most mothers do, I had a gut feeling when we found out we were having a boy that I was a carrier and he would be born with hemophilia.
The next steps involved a lot of blood tests and meeting with hematologists and my OB-GYN to discuss options for delivery. Due to the rural area we live in, treatment for those with hemophilia is limited as the medicine is not readily available and many providers have little experience on treating it. Once the results showed I was a carrier, I knew that things would change for us. The happiness of adding to our was pushed aside due to the new worries I had regarding the possibility of having a child with a bleeding disorder. I lost the excitement of preparing for a baby shower or baby BBQ as we called it and my brain was kept busy all day and night focused on “what if” thoughts.
Due to my carrier status, it was decided that I should deliver at a hospital where the baby’s cord blood could be tested immediately and I could have treatment provided during delivery if needed. Unfortunately, that also led to many out of town appointments, since the nearest hospital that could provide this was two hours away. If you’re a mother, you can probably relate to long car rides in very humid weather and how that affects your body (hello cankles!). I took it in stride and knew that it was the best option for our situation. It was a struggle because I loved my OB-GYN back home and was comfortable being in their care. Three weeks prior to the date the cesarean section was scheduled I found out the doctor I had been seeing the last 4 weeks wouldn’t be delivering my baby. Another bump in the road! Although I was shown a picture from a website of the doctor who would deliver, it just didn’t feel as comforting as having my own team of doctor’s from back home perform the procedure.
The day arrived, my husband and I finally got to meet the delivering doctor and we were excited to meet our little guy. It was also the day that we would learn if our lives as parents would change even more than we had imagined.
Due to being a carrier, the anesthesiologist decided that I should be treated before the procedure. I found it odd because when I had my daughter we didn’t know anything about carrier status, so I wasn’t treated then and things were normal. Well, they were normal to me, but as it turns out my first experience wasn’t normal. I was so thankful for that doctor and the hematologists who worked together to make sure I was also safe during delivery.
My husband and I were finally out of recovery and back in our room with our 10 lbs. 7 oz. baby boy with our daughter, my sister, and my parents. Everyone was taking pictures and holding the baby, soaking up the joy of having him in our arms. Then time stopped. The OB-GYN, who we had just met a few hours prior, came into the room. He sat down on my bed and blatantly said, “I’m not going to sugar coat this. He does have hemophilia. I overheard the hematologists discussing your son’s results.” Tears came to my eyes instantly, even though I thought I was prepared for this news. My daughter was asking, “What’s wrong with my brother? Why is mommy crying?”
I was not upset hearing the diagnosis because I had mentally prepared myself for that.. But I was hurt by the delivery of it and the worry it had caused my family, specifically my daughter. I questioned:
“How could he be so heartless and not in touch with his patient’s feelings?”
“Why didn’t he ask if now was a good time to discuss the results?”
“Why did he just ruin this joyful time of my baby boy meeting his family for the first time?”
“Is this how he always delivers news of this magnitude? What if we weren’t expecting to hear this? I hope no other parents have to hear it this way.”
After the initial shock of the news wore off, reality hit. So many other worries flooded my brain:
“How will I know if he has a bleed when he can’t tell me?”
“My babysitters were limited before, but now even more so!”
“Will people think of him differently?”
A moment which should have been filled with joy was overcome by worry. I should have been able to enjoy being a mom of two and snuggle a precious “little” baby, instead all I could think about was what the future would be like for my family.
Learning to live with a child with a bleeding disorder, even though you knew it could be possible and you had family history is hard. You can treat it one of two ways: educate yourself and live life to the fullest of your abilities or succumb to the worry and let it take over your life. I am choosing to live life to the fullest and educate myself and my family!
Ashley lives with her husband Brock, and 8-year-old daughter, Gracie, and infant son, Jackson in New York.
*Note: “Infusing Love: A Mom’s View,” 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 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.