Chloe
I had a perfect pregnancy with my first and only child, Chloe. I did everything by the book. I wanted the best for her from the beginning. I loved feeling that bond with her, especially in the last few months of my pregnancy.
After an easy labor and delivery, Chloe was born at 1:57pm on Election Day 2008. We put our "I Voted" sticker on her swaddle and held up a mini American flag for a family photo in the hospital. We were all laughs and smiles at that moment. Thank goodness for the little things.
Around 9pm we settled in for the night. I began to swaddle Chloe for bedtime when I noticed she looked like she wasn't breathing. I couldn't see any rise or fall movement on her chest. I called in the nurse. She said I was having "new Mommy jitters" and that Chloe has tested well all day and she is fine. I sat and stared at Chloe for another 15 minutes. Even my husband was trying to get me to calm down and go to sleep. I called in the nurse again. A different nurse came this time. She took out her stethoscope and also said that Chloe was fine and that I needed to get some rest. I picked Chloe up and held her for about ten more minutes. I couldn't shake this feeling. She looked like a little doll - completely still in my arms. I pressed the nurse button again. The first nurse came in again and I told her that I really think something is wrong with Chloe. I asked if they could take her to the nursery so they can keep an eye on her. They finally took her, about 9:45pm.
I slept for a bit and woke up with a start around 11:30pm. I was wide awake and didn't know why. I decided to walk down to the nursery to see Chloe. When I got there, I didn't see her in any of the bassinets. I thought that was odd, but didn't question it. When I turned around, I saw a rush of doctors and big X-ray equipment being pushed into the nursery. I saw a baby way in the back surrounded by nurses. I had no idea it was Chloe.
When I got back to my room, I buzzed the nurse. I wanted to know how Chloe was doing. Why wasn't she in a bassinet? Was she eating? Was she getting a bath? The nurse came in and told me that they ran some tests and there was indeed something wrong with Chloe. She said they will know more soon and will let me know.
I felt like screaming "I TOLD YOU SO! I KNEW SOMETHING WAS WRONG WITH HER BUT YOU KEPT DISMISSING ME!".
I woke my husband from the sofabed and told him what was going on. He crawled into bed with me and we laid there, wondering outloud what could be wrong with her. Did she have a virus? Pneumonia? Lung problems? We kept saying that we would have known by now if something major was wrong with her. We would have known with the ultrasounds, or with the APGAR testing, or when the doctor checked her right when she was born. This can't possibly be serious.
I, of course, kept buzzing the nurse every 30 minutes but they never had any new info. Finally, at 3am, a doctor came in the room. He introduced himself as a pediatric cardiologist. It didn't register that he was a heart doctor. He sat us down and explained that Chloe was born with a Congenital Heart Defect that would require open heart surgery. The cry/scream that came out of my mouth was like nothing I have ever heard before. Just pure, loud heart wrenching sobs. The doctor kept talking to my husband but I wasn't even listening. All I kept thinking was those three SCARY words - open heart surgery.
Chloe went on to spend two weeks in the NICU at Children's Mercy Hospital in Kansas City. She was sent home with meds, oxygen tanks, pulse/ox monitor, and a feeding pump. We spent all winter inside the house for fear of Chloe getting sick. We missed Thanksgiving and Christmas with our families for fear of exposing Chloe to germs. At two months, she had a cardiac catheterization and Atrial Balloon Septostomy. At four months, she had her open heart surgery (Arterial Switch) at the Children's Hospital in Denver, Colorado. At seven months she was still not able to eat orally, so they switched the feeding tube from her nose to her tummy. She is now 9 months and we visit her cardiologist regularly.
Before this, I had no idea they even performed open heart surgery on babies. I didn't know what an echocardiogram was or what arteries connected to what ventricles inside the heart. I didn't know how to insert a feeding tube into an infant's nose down to her tummy. I didn't know how many breaths per minute an infant was supposed to take. I had no idea that CHD is the #1 birth defect and leading cause of birth-defect related deaths. I didn't know that while it is the most common birth defect, it is the least publicized. I didn't know that 40,000 infants are born with CHD each year in the U.S. but newborns are not screened for CHD's.
This is a letter of hope for my child with a broken heart, but I wish it was more. I wish it was a blank check to pay for advancing research, promoting education and providing early screening capabilities for pregnant mothers. This letter won't erase the scars on her chest, but it may help raise awareness. And that awareness may help raise money. And that money may go towards research. And that research may find a way to prevent this from happening to the 1 in every 100 births every year.
Kelly Manz