Haydn Elise Huddleson was born April 14, 2016. There were no complications during the pregnancy or delivery. She did struggle with bilirubin and had to have a biliblanket for several days. Her heart rates/pressures were always within normal range in utero and after birth. Haydn’s pediatrician/cardiologist noticed a slight murmur, but we were told to just monitor for changes.
At one month old, she started having moments of rapid breathing mixed with moments of slow breathing. She was monitored for irregular breathing and weight gain.
By 2 months of age, Haydn was rushed into an echocardiogram due to continued breathing issues and lack of weight gain. After several hours in the echo room, we were were told that Haydn had 7 different heart defects and one of them needed to be repaired immediately or her heart would go into complete failure. We were in complete shock. Her heart defects include: dextrocardia, mitral valve cleft, coarctation of the aorta, patent ductus arteriosus, partial AV canal, and tricuspid valve regurgitation. She was also diagnosed with pulmonary hypertension, but it was later ruled secondary to the other defects through a cath procedure. She had fluid in her lungs and an enlarged heart from the regurgitation and improper blood flow. She was started on Lasix to help decrease the fluid buildup. Doctors said it was like a five lane highway trying to merge into one. Haydn was sent to another hospital upon the findings and was admitted into the PICU. The cardiology team met and placed her on a medicine to keep her aorta opened while they planned for surgery.
She had her first surgery on June 28, 2016 through a thoracotomy to repair the Coarctation and tie off the Patent Ductus Arteriosus. Due to a paralyzed left vocal cord during surgery and need for immediate weight gain, Haydn was sent home with an NG tube. They added two more heart medicines to the mix and a medicine for acid reflux.
After many failed attempts and vomiting, she had surgery for her g-tube 3 weeks later. Her vocal cord started working again after 6 months, but she had lost knowledge of how to feed. Feeding therapy began.
On June 16, 2017, Haydn had open heart surgery to patch the Partial AV Canal. After two heart surgeries, her tricuspid valve regurgitation is non-existent and her pulmonary hypertension is no longer a factor. She has been able to discontinue two of the heart meds and will remain on the last heart medicine for the rest of her life. She has had speech therapy for 3 years and feeding therapy lasted for about 2 years. Haydn demonstrated that she could eat all textures and passed various swallow tests. She physically caught up immediately to her peers.
In August 2018, Haydn had her adenoids removed and ear tubes placed to help reduce illness. She is now eating more options and we are slowly weaning off the g-tube.
In October 2019, she was diagnosed with Autism and expressive language deficits. She is extremely bright and has done well with a trial communication device. We are now going through approval to receive her own device. Haydn is in the special education preschool class and continues speech therapy. She has met almost every goal set for her. Haydn has made so many new connections this year through school and everyday life experiences now that she is healthier. She will have one more open heart surgery around age 5 to repair the mitral valve cleft. We were told by her doctors that she truly is a miracle because her defects combined together normally lead to complete heart failure or death if not found early on. She made it 2 months. We praise God everyday for this miracle. No matter what has happened in her short life, Haydn enjoys life and brings joy to everyone’s life around her with her smile and laughter.
