I am a thirty-something stay at home mom to two beautiful daughters. My first child, Chloe June, was born in 2008 with a rare congenital heart defect called Taussig-Bing (DORV, d-TGA, VSD, ASD).
Chloe has inspired me to raise as much awareness as I can about CHD, as well as help other heart families with this informational website.
I also love to wear my CHD Babies gear and run in races, raising awareness to the finish line.
Chloe’s Law finally went into effect January 1, 2014!!
Thanks for visiting! Contact me anytime!
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 in 2009 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 the most critical. It is key to catch an undiagnosed CHD as quickly as possible to greatly improve overall outcome!
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 had weekly physical, speech and occupational therapy until age 3.
At age 4, we were able to wean Chloe from the tube feedings and she now eats well on her own!
Before age 10, Chloe will need to have at least one other 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.
I spent 2009-2013 working on Chloe’s Law, mandatory pulse oximetry screening on all newborns in the State of Missouri before leaving the hospital. We were the first State to introduce a CCHD Screening bill back in 2009 and it finally passed in 2013! Many other states quickly followed and passed their own laws/mandates to screen every newborn for CCHD.
Now that I am a non-profit organization, I am SO EXCITED to promote awareness for Congenital Heart Defects in an athletic and family friendly atmosphere! Run for LITTLE Hearts 10K/5K/Kids Dash is an annual event that will raise proceeds for CHD Families Association, a local volunteer based 501c3 that supports over 500 heart families (like mine) in the MO/KS area. We will also raise funds for CHD medical research as well!