Dear Nicholas Sparks,
I wanted to write my own book, after all, my story is certainly one for the big screen. Sadly, my story isn’t fiction, it’s very much my reality, but it does have a happy ending that is currently in the making.
I can begin where I thought that I had it all just 4 and half short years ago. I still remember saying to one of my best friends that morning “How did I get so lucky? I have a husband who loves me, a healthy baby on the way, a great job, family and friends. I have everything I ever wanted.” Then I went to my office to continue on with my normal day, as routine as any other. But one thing was different that day, I had checked my mail on the way to work; there it was, a pink card addressed to me in the middle of January. I opened the card, it was like the phone call that brings you to your knees. Through this card, in an instant my world as I knew it turned upside down. I’m not actually writing a novel, so I’ll cut to the details. I found out my husband had been having an affair and the secret that was most devastating, he had a 6 week old baby with this woman. I sat in my office chair, 38 years old, 22 weeks pregnant and totally devastated. This wasn’t how I planned out my happily ever after.
Thankfully, I was raised by an amazing mom who is tough as nails. She taught me to pursue my dreams and be strong and independent. Well, being the strong, independent woman I had become, you know exactly what happened next. I moved my husband out of the house that day, filed for divorce, put my lipstick and heels on, a smile on my face to convince to world that I’m ok and somehow kept breathing. I kept getting up every day and faced my future as a single mom with as much grace and dignity as I could summon from the depths of my soul.
6 weeks later, I arrived to my routine ultrasound at my high risk OBGYN’s office for us older moms, and waited to see that healthy little baby boy I was carrying on the ultrasound. I was alone when the Ultrasound Technician left the room to get the doctor. She said she saw something and needed a deeper look. My doctor came in, verified what she saw, and told me my baby had a Congenital Diaphragmatic Hernia known as CDH. He continued to share that while this is a repairable defect, the reality was that only 50% of babies born with CDH survive. He gave me a lot of hope, but he gave me facts too. I sat there strong and took this all in. Then I returned to my car in the parking lot where I sat sobbing for two hours because I couldn’t see through my tears and swollen eyes to drive. I couldn’t have a conversation because I couldn’t speak through the inconsolable crying.
I had already thought the worst possible thing had happened to me, my heart was already broken… how would I possibly survive this too. But this day was also a turning point, the moment I realized what mattered most was this baby I was carrying and getting him here as strong as he could be. This was the first day of a very long CDH road, a road we are still travelling and always will.
Why had I not ever heard about CDH? I have heard of all the other defects that are just as common like Cystic Fibrosis and Spina Bifida, but not this one and yet it takes 50% of the babies that are born with it. I started doing as much research as I could, and that is when I found Cherubs. Through a family member I actually was introduced through Facebook to a mom in Texas whose son was born with CDH, she was a member of Cherubs and told me about it. Through Cherubs I learned a lot more about CDH and they even sent me a tote bag of information and resources to navigate this journey I was on.
The next 11 weeks were filled with a lot of appointments; lung specialist, the heart doctor, the surgeon and multiple visits to my OBGYN’s office for fetal monitoring. In the midst of this I was also going through a divorce and trying to navigate a very uncertain future. I was terrified of the unknown of what was to come.
By the grace of God, a lot of prayers and some amazing friends who came to my rescue, I made it to 40 weeks. My son was born on Friday the 13th in May of 2011. He ended up joining the world by emergency c-section. Most moms get to hold their baby within minutes or seconds of delivery. Instead I waited for what seemed like an eternity to hear him cry, I kept asking my friend who bravely shared in my birth, “how is my baby, why isn’t he crying?”….then I heard it, after what seemed like an eternity he let out a small cry. I learned later that it was when they had to pull out the ventilator tube and reinsert it into my small 6lb 9oz baby’s airway. The nurses carried him over about 5 feet away and I called to him “Benjamin, its mommy”, he heard my voice, he knew me. He was then whisked away to the NICU. The next time I would see him was nearly 18 long hours later and that view came through a small see through NICU bed. It would be 11 days before I could hold him. I won’t complain about my 11 days though, because for some moms and dads, the first time they hold their baby is also their last.
My son had his repair surgery at 7 days old and quickly began to recover, my surgeon said he was one of the best cases he had seen. How could that be? I had been so terrified, and yet it could have been so much worse. At 28 days I got to bring my baby home...I got to bring my baby home…I got to bring my baby home! Every day for the rest of my life I will remember and rejoice in that moment, because I know that I am among only half the parents that get to bring their baby home. I know that I am beyond blessed. I also know the pain that I have endured on this journey and wonder how to the parents breathe that lose their child. And yet, you’ve read so many of their stories on here Mr. Sparks, their absolute strength and bravery. So many times I have wondered why my baby lived and someone else’s baby had to earn their wings. I think the part of this journey some don’t talk about is the guilt in that. While I am overjoyed at the miracle in front of me and the many milestones he has and birthdays he celebrates; I know there is a mom, a dad, a grandparent, a sibling, an aunt that will forever mourn their baby in heaven, their Cherub who earned their wings. Those stories should be told and their ending one day re-written.
I’d like to say that bringing my son home is where CDH ended. It didn’t. We’ve been to the ER so many times, my son has already had 2 additional surgeries including an emergency surgery for a double intestinal blockage and that is likely to happen again. He was 2, so little and yet so brave. He has had RSV because his lungs are more delicate that other kids his age. He has had severe reflux, a common side effect of CDH. He had to wear a helmet, because he was on his back so long in the NICU when he should have been home doing tummy time. He has a pretty sunken chest, and because it hasn’t improved he will likely need chest surgery in his teens to correct it. And he is one of the lucky ones.
CDH isn’t more important than any other illness that effects babies and kids. But we want the voice of CDH to be heard. We want it felt in the heart of a great story and maybe shared on the big screen one day. Because these are real stories, these are real lives, these are stories of bravery and triumph and little heroes. Because the heroes aren’t just those that live, they are also those babies who earned their wings and fly high watching over their families, giving a little tug at their mommy’s heart to say “hey mom, I see you and I’m still here”. The heroes are the nurses and doctors who tirelessly watch over our babies and give everything they can to get them home.
Tonight I made a cake with my son, he licked the chocolate from the spatula. I want more families to experience that pure joy. We know we can’t cure CDH, there isn’t a cure for a Congenital Diaphragmatic Hernia. But just maybe if enough people knew what CDH was, then more people would care, they would gladly pay $100 for an ice bucket challenge rather than think that another defect or illness is more important. Maybe with more funding for CDH and research, medical advances could find a way to repair and prevent the many complications that come with CDH.
Thanks Mr. Sparks for reading my letter and the many others that have been written to you. My son just woke up, it’s midnight and we should both be sleeping. I won’t complain, I know a hundred moms who would trade their sleep for a waking baby, they have dreamed of it. Let’s write more happy endings!
Jill Gibson, Mom to a survivor, State Rep for CHERUBS