Our Baby Story: A Story of Hope

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 a short labor and easy delivery, Chloe was born at 1:57 p.m. on Election Day, Nov. 4, 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 9:00, 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 was fine. I sat and stared at Chloe for another 15 minutes. Even my husband tried 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 10 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 thought something was wrong with Chloe. I demanded they take her to the nursery so they could keep an eye on her. Finally, they did, around 9:45.

I slept for a bit and woke up with a start around 11:30. 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 would know more soon and would let me know.

I woke my husband from the sofa bed and told him what was going on. He crawled into bed with me and we laid there, wondering out loud 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 couldn’t possibly be serious.

I kept buzzing the nurses every 30 minutes but they never had any new info. Finally, at 3 in the morning, 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 could think was those three SCARY words: open heart surgery.

Chloe went on to spend two weeks in the NICU at Children’s Mercy. 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’s getting sick. We missed Thanksgiving and Christmas with our families for fear of exposing Chloe to germs. At 2 months, she had a cardiac catheterization and balloon atrial septostomy. At 4 months, she had her open heart surgery, the arterial switch operation, at The Children’s Hospital in Denver. At 7 months she was still not able to eat orally, so they switched the NG feeding tube from her nose to a Mickey Gtube in her tummy. She is now 17 months and we visit her cardiologist regularly. She also has bi-weekly speech, physical and occupational therapy.

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 leading cause of birth-defect related deaths. I didn’t know that 40,000 infants are born with CHD each year in the United States but newborns are not screened for CHDs.

Since Chloe’s birth, I have wanted to do my part in the fight for our CHD babies. One way is getting Chloe’s Law passed. It is a law I wrote that would make pulse oximetry mandatory on every baby born in Missouri. It would be part of the newborn screening requirements at every hospital in the state and would be performed after the first 24 hours after birth but before discharge. It is a fast, easy, painless and inexpensive way to screen for CHD. It will NOT catch all heart defects, but it will catch some. I’m hoping that Chloe’s law will be passed in 2010.

I also started a blog for new and veteran heart families http://CHDBabies.blogspot.com. It is very therapeutic for me to learn all I can about our nation’s number one birth defect and relay this information to others.

This is a story of hope. Hope that Chloe’s story will reach women everywhere who are thinking of having a child. Hope that they will ask their prenatal doctors about CHD and learn all about the signs & symptoms. Hope that hospitals everywhere will soon take it upon themselves to add the pulse oximetry to their newborn screening checklist. Hope that someday CHD research will get the funding it needs and deserves.

Kelly Manz, author of the informational blog, CHD Babies, lives in Lee's Summit with her husband and two year old daughter, Chloe, a CHD survivor.