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I am a 33 year old stay at home mom. My daughter, Chloe June, was born in 2008 with a rare congenital heart defect called Taussig-Bing (DORV, d-TGA, VSD, ASD).
I had a perfect pregnancy with Chloe (my first and only child). 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 1:57pm on Election Day November 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 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 demanded they take her to the nursery so they can keep an eye on her. Finally, they did, around 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 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 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.
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 U.S. but newborns are not screened for CHDs.
Chloe's heart defect was discovered 9 hours after her birth with the help of mother's intuition and a Pulse Oximetry Screening (not standard on newborns). Since her 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 of 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.
Chloe went on to spend two weeks in the NICU at the Children’s Hospital. 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, even though she received monthly RSV shots. She needed to gain weight before she could have her open heart surgery.
By 2 months old, her oxygen sats continued to get worse, so they did a Balloon Atrial Septostomy to increase the size of her ASD. The hope was that this would buy her more time so she could gain more weight. By 4 months, her VSD was closing on its own and the doctors couldn’t wait any longer for Chloe to gain weight. She had to have open heart surgery immediately. Since the surgeons in Kansas City couldn’t operate on Chloe due to her rare coronary artery pattern, we had to find a surgeon who could. Luckily, we found him at Denver Children’s Hospital and made the 13 hour drive a few days later. Chloe sailed through her Arterial Switch Operation with flying colors! We went home eight days later. At seven 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 had the Nissen Fundoplication at that time as well. She currently has weekly physical, speech and occupational therapy.
At 18 months old, we weaned Chloe off the Gtube and tummy meds, but she never gained weight on her own. She is now 21 months old (August 2010) and she is back on two tube feedings a day, plus an overnight drip.
Before junior high school, Chloe will need to have another open heart surgery to replace a leaky valve.
Chloe was recently diagnosed with femoral anteversion. About 20% of kids have it, and 70% of them out grow it. We have to wait and hope she is that lucky! We won't know until she is six or seven years old.
Chloe also just had surgery to remove an extremely rare birth defect in her neck. To read more about the surgery and to see photos, click here.
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