Tuesday, August 28, 2012

Hayden's Story

Those of you who have children know that the day your child is born is supposed to be one of the happiest days of your life. For me and for my husband, the joy we felt upon our daughter Hayden’s birth was quickly replaced with fear. The nurses immediately noticed that she was not crying - instead she was grunting. They also were worried about her belly which was extremely distended. The nurse tried to sound as calm as she possibly could when, minutes after Hayden being born, she told me they needed to take a look at her down in the nursery. I immediately knew something was wrong.

Before we knew it, we were being told by doctors that Hayden needed to be rushed from Lakeside, where I delivered, to Baptist Hospital. Once she arrived she would be having surgery. They knew she had an intestinal blockage of some sort, they just didn’t know what kind. After much pleading with the Lakeside staff, I was released early and made it to Baptist just in time to see Hayden being wheeled to the operating room. I could not have felt more helpless.

I will never forget the look on the surgeon's face when he came out to speak with us afterward. His expression instantly told me something wasn’t good. I went completely numb as he explained to us that what he found blocking Hayden’s intestines was meconium ileus. Not only had it destroyed eight inches of her colon that had to be removed, it was a sign of cystic fibrosis. Genetic testing needed to be done to receive the official diagnosis, but we were encouraged to start preparing ourselves for the diagnosis that would change our lives forever.

 I am not sure how many of you here today are familiar with CF and its symptoms. Ryan and I barely knew anything about the disease when Hayden was diagnosed. We found out that we were both carriers of the mutated CF gene. Therefore, we had a 1 in 4 chance of our pregnancy resulting in a CF child. Statistics show that approximately 1 in 25 people are a CF carrier. CF causes the sodium chloride channel in the cell to malfunction. This results in a thick, sticky mucus throughout the body. The mucus builds up in the lungs causing infections, inflammation and blockages. Even “healthy” CFers lose lung function every year. Lung transplants are now being done but, without an anti-rejection drug, these are only sometimes successful.

 Of all the things the doctor first told us about CF, one thing stood out to me. I remember it all being an overwhelming blur of information until he told me that my precious baby girl’s life expectancy was approximately 36 years of age. That’s where my mind came to a screeching halt and I felt every part of me say “no. absolutely not. I refuse to sit back and let this disease take my daughter’s life. I refuse to let it rob her of all the life experiences that she deserves to have.” The day Hayden came home from the NICU at two weeks old, I called the Oklahoma City chapter of the Cystic Fibrosis Foundation. I introduced myself, told them about Hayden, and asked them to put me to work.

Hayden is now six years old and just started first grade. To say she keeps me on my toes would be an understatement! I would say that most days she is a step ahead of me with an energy and drive that I can barely keep up with! But that little girl, who has to endure hours of breathing treatments every day (and who swallows a minimum of 22 pills a day) has a strength that I don’t find in most adults. I’ll never forget a time when Hayden was only 3 years old and it was time for her annual bloodwork to be done. She was sitting in my lap when they put the needle into her arm. I immediately starting singing to try and comfort her… when I realized she wasn’t even crying. She simply looked up and me and “Mommy, I’m ok”. So I cried. I cried for two reasons: one, I was so proud of Hayden and the strength she already possessed at such a young age. But I was also crying because no three-year-old child should HAVE to be that strong.

For years and years, I dreaded “the conversation”. The one where Hayden would figure out there was something different about her and want to know why. For years I played it all out in my head – how I would explain it to her in a way that was honest and real, but not confusing and scary. And then about six months ago, the questions began. Luckily for me, they came slowly and not all at once. Questions like “why do I take pills when none of my friends do” and “why do I have to do all of these treatments all the time?”. I explained to her that she has something called CF and that it makes her special because not many people have it. I have watched her process all we have talked about over these months and I have known more questions would be coming. The hard ones. The ones I don’t have the answers for. She asked me one just the other day. “Mom, when do I get to stop doing all my treatments and stop having throat swabs all the time? Will I ever get to stop?” My answer to that was “Sweetie, I really hope so. That’s something that mommy prays for all the time”.

 But there’s still one question I fear. I know it won’t come until Hayden is older and has really begun to process what a disease like cystic fibrosis means for her life. But it’s a question that countless CF parents have had to answer and it’s one that no child should have to ask…..”Mommy, am I going to die?” I’m sure every parent’s response to that has been a comforting “no, sweetie. We are going to beat this”. But I’m also sure that, even as they answered, they were desperately praying that it wasn’t a lie.

This disease is ugly. We still lose lives to CF all the time. Even at our own events here in OKC, it breaks my heart to see a CFer accepting an award one year, and the following year their families are accepting the award in their memory. But the main thing I gained from that phone call I placed to the CF Foundation 6 years ago is that I got to hear the message of hope. I got to see firsthand the science that will save my daughter’s life. And it’s there! The CF Foundation isn’t searching for a needle in haystack to try and cure this disease. They found it years ago. What they need now is the money to fund the science. Just months ago, the FDA approved the first drug for CF that corrects the underlying defect rather than just help with the symptoms. Many of us in the CF community call it the “magic pill”. The patients on Kalydeco, as it’s called, have seen their pulmonary function rise dramatically and the hope for the future is that they will soon be able to stop all their other treatments indefinitely. While Kalydeco is only for CFers with a certain mutation, the next “magic pill” - the one that would treat Hayden and majority of others with CF - is already in Stage 3 clinical trials. There is so much hope for the futures of those with CF. Because of the donations to the CF Foundation and the science those donations are funding, I truly believe that Hayden will grow to have a long, happy life.  I know they are going to someday make CF stand for “Cure Found”.  And I believe Hayden will be here to see it happen.

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