Cohen's Story

In the previous blog, I told the story of our experiences with our daughter with her CF diagnosis and what it has been like for her. I now want to share my experience with my son Cohen and how he came to be diagnosed with Cystic Fibrosis as well.

Because Matt and I each carry a defective gene for CF, every child we have has a 1 in 4 chance of having CF. We, of course, did not know we carried the genes until after we had Emberlynn and she was diagnosed with CF because a person can only have the disease if both parents are carriers. It’s just like if we each carried a recessive gene for blue eyes; we don’t have blue eyes, but our children could potentially have blue eyes (and, incidentally, Emberlynn does have blue eyes).

It broke my heart knowing these odds. Matt and I knew we wanted more children. I could not bare the thought of thinking I would never have another child because we let the chances of them having this disease stop us. We talked about having another child soon after Emberlynn turned one. We decided that even though there was a chance of having another child with CF, we would be prepared for it and would at least be well-versed in the disease.

I found out I was expecting in April and was given a due date of January 1st. From the beginning, I suspected I was having a boy, which was exciting. It would be wonderful to have both a daughter and a son, and I looked forward to the different challenges of a boy as opposed to a girl.

For the duration of my pregnancy, the thought of the CF possibility was always firmly implanted in my mind, but I tried to stay positive. Family and friends remained optimistic, so I tried to feed off that.

My beautiful son Cohen Micah was born December 21, 2007. He was by far the most beautiful baby boy I have ever laid eyes on. His head was full of dark, silky hair, and his eyes were a deep blue. I kept saying to Matt, “Isn’t he beautiful?” He was absolutely perfect.

We were not able to have him tested in the hospital, so I had to schedule an appointment at Vanderbilt to have them draw blood to do a genetic test. Because Emberlynn has CF, they know the exact genes they would need to look for in the DNA, so a sweat test would be unnecessary to test him. In mid-January, when he was three weeks old, we had the blood drawn. I was told it would take anywhere from two to four weeks to have the results back.

Even though I was a bundle of nerves waiting for the results to come back, I was trying to stay positive. Cohen was steadily gaining weight, so I told myself it was a sign that he may not have it. But there was this ever-present fear that he was not fine. I tried to suppress it, but it was always there.

On the afternoon of Wednesday, February 6, Matt and I were sitting on the couch watching TV. Cohen was sleeping soundly on Matt’s chest, and my phone rang. I recognized the number as a Vanderbilt number, and I was immediately tense. When I answered, it was a nurse who calmly explained that Cohen’s results had come back and were the same as Emberlynn’s, which meant he, too, had CF.

As soon as I hung up with the nurse, I broke down in hysterics. Matt knew how the conversation had gone without my explaining anything. I took Cohen from him and pulled my baby boy close to me, as if holding him and whispering how sorry I was could somehow take it away.

I kept saying to Matt, “What have we done to our babies?” I felt guilty that we brought another child into the world knowing what the consequences could be. I just wanted to take it away from him and Emberlynn and for me to be the one who would have to suffer through life instead of them.

Even though I told myself from the beginning of the pregnancy that I would be prepared and I would be able to handle it, no amount of convincing can ever prepare you to hear news like that all over again. I felt like I was back in the exam room at Vanderbilt the day Emberlynn was diagnosed. It was like a recurring nightmare from which you wake up screaming.

And here we are now. Cohen is eighteen months old, and he is, without a doubt, a mommy’s boy, which is fine by me. I love his big, contagious grin, his belly laughs, his funny faces, the crazy sounds he makes--I can’t get enough of him. Like his sister, he is intelligent and lovable and a very happy child all-around. I would not trade my son or anything about him.

Having two children with CF is very difficult. Matt and I are responsible not only for the normal things parents do but also for keeping our children as healthy as we can by doing therapies and treatments for them. We have good days and bad days. Most days go by and I just go with it, not knowing a life any different. But there are some days I just cry because the reality of it all rips my heart to shreds. My children have a disease that can and will most likely take their life one day. And if you have children, you know that having something like that in the back of your mind will eat at you.

I have never been angry with God. I am extremely blessed to have my children, and I suppose God felt I could handle this kind of thing. I will admit I have questioned Him, but most of the time, I just pray that He keep His hand over my children and to give me the strength to carry on and to help me be a good mom to my children. I hope when they get older that they can sincerely say that I did okay. Because I’m really trying. I’m doing the best I can.

Faith...Hope...Cure...

-Jessica A.