Why We Decided to Have More Kids After Our First Was Born With a Rare Genetic Condition


310496_10152071297235427_2036390_n I’m writing this as I sit here, 37 weeks pregnant, in the labour and delivery unit of a hospital. With my cervical sticker in place and the monitors hooked up to measure for any contractions, I feel anxious and afraid. Yes, that’s right, I’m being induced at this very moment, and hopefully in a few hours I will get to meet my daughter. Exciting right? It should be, but unfortunately our life is anything but normal. Let me start at the beginning.

In December 2005, my seemingly healthy, beautiful son, Isaac, was born. At 2 months old, Isaac was diagnosed with familial Hemophagocytic Lymphohistiocytosis (HLH), a life-threatening condition affecting his immune system. We spent the next year fighting for his life. Isaac received treatments of chemotherapy and many other drugs for six months and had his life-saving bone marrow transplant at 8 months old. Now, he’s nearly 9 years old — a healthy and active little boy, and we feel blessed to have him.

We waited a long time before having enough courage to try for another child. We knew that every pregnancy would hold a 25 percent chance of our baby having HLH. Finally we decided to trust in whatever God’s plan is for us. In 2011, I got pregnant, and at 11-weeks gestation, we had testing done to find out if our baby was also affected with the disorder. The results were not what we wanted. Our second son was also sick. Leland was born still at 39 weeks. Our hearts were broken, but we believe God must have had a plan, and we trusted in that. I love my child and will never forget him. I feel certain that one day I will see him again.

Exactly one year and a week to the day we lost Leland, Elijah, our third son, was born — a beautiful, healthy boy who tested negative for HLH. We couldn’t have been happier. He will be 2 on January 21st.

Now I believe all things happen for a reason. Sometimes we just don’t understand what that reason could possibly be. Maybe God has a sense of humor. In April 2014, we were completely surprised to be expecting a fourth child. While I had mixed emotions, my husband was elated. He was convinced it was a girl.

I was more afraid than I’d ever been before. I had two beautiful children, and I didn’t want them to have to go through life with a sick child — constant hospital visits, waiting in sterile little rooms, being away from their mother, not being able to be close with their new sibling, traveling back and forth, staying in strange places. The stress of it all just seemed so unfair. My husband reassured me that no matter what, everything would be OK and we would do what we had to. I agreed, but I don’t feel shame for not being sure. This new life is going to change all our lives. It’s going to be rough, and while I have good days when I feel positive, I also often feel like falling apart and running away from it all.

10306166_10154843560605427_8967782372208471342_n In August, we received the results of the HLH tests, and I knew the results before the geneticist told me. I knew deep in my heart this child would be sick, and I’m so sad to say I was right.

What I wasn’t prepared for was for her to also tell me that my baby was a girl. That one was a shock! And for the first time during this pregnancy, I felt some happiness. I let myself smile, and I cried. This was meant to be. Things would turn out fine. I’m going to have a daughter, and I have to be strong for her. I need to remind myself that I’m human and it’s normal to not always know how to make the right decision. It’s OK to take time to think or freak out.

We have hope for our daughter, who we’ve named Magnolia. And so, as we patiently wait for her to make her arrival, we’re completely content with our decision to have more children, and we pray to have enough strength to handle whatever may come our way.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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