Our little warrior Cael was diagnosed with a broken heart at 20 weeks gestation during a routine ultrasound. We found out that Cael had congenital heart defects. He had various problems with his heart, but ultimately a rare disease called Hypoplastic Left Heart Syndrome. This rare heart defect occurs in 1 out of every 10,000 births. During that same ultrasound the doctors also found something called Hydrops Fetalis or signs of heart failure in utero. That day we were given four choices: 1st - terminate the pregnancy, 2nd - "let nature take its course" (If not corrected, Hypoplastic Left Heart is 100% fatal and the child will die within the first few hours to days after birth), 3rd - give birth to the baby and he will be required to undergo a series of three staged corrective surgeries (The first surgery has only about a 75% success rate.), 4th - attempt an experimental intrauterine surgery performed by pediatric cardiologists in Boston. (We later found out we were not candidates for this procedure because his condition had progressed past the point of correction in utero). For us there was no other choice than to fight along side our mighty warrior! Despite the severity of the many defects, Cael outlived the doctors’ expectations and continued to fight in his mommy’s belly! He was born March 31, 2012 in Pittsburgh, PA. Immediately after birth he was rushed to Children’s Hospital of Pittsburgh to the Cardiac Catherization Lab. Here they created a passage between the top two chambers of his heart to allow the limited blood flow to circulate. It was only a short time after he was born that he underwent his first of many heart procedures. His first few hours of life were difficult ones where he fought hard to keep his little heart strong. At five days of age, he had his first of at least three open heart surgeries. Cael’s surgery went very well, but his heart was having a difficult time adapting to its new anatomy shortly after surgery. He went into cardiac arrest and required life support to aid his troubled heart. In addition to all of the cardiac defects, Cael was also diagnosed with Congenital Hypothyroidism. His thyroid function and levels are controlled and monitored closely. After weeks of riding the roller coaster of ups and downs, Cael was able to recover from the procedures and go home before his next surgery. At 3 ½ months of age, Cael underwent his second cardiac catheterization and a few days later, his next open heart surgery. During this hospital stay, Cael went through a great deal of pain while his body adjusted to the new circulation of his little heart. After overcoming the many obstacles after the surgery, Cael was once again discharged to go home. While we were home Cael was monitored closely as he had several appointments each week at Children's Hospital. During two of his procedures, Cael had blood clots that formed which resulted in him needing to be on Lovenox therapy. This required him having Lovenox injections twice a day for 7 months.
Because of Cael’s condition after birth he was not able to eat for the first three weeks of life. This was a setback in his development and oral skills. Due to the delay in eating, Cael had difficulties and challenges eating. He was fed through an NG (Nasal Gastric) tube that was inserted in his nose and into his stomach for five months of his life. When he was five months old, he once again underwent surgery to get a feeding tube (G tube) surgically placed into his little belly and to have the top of his stomach wrapped around his esophagus to prevent aspiration (Fundoplication). Even now at nine months of age, Cael still struggles with eating and is fed primarily through the feeding tube in his stomach. We work with many therapists to help him learn how to eat and drink.
Cael goes for routine cardiologist visits and echocardiograms. He will undergo his next open heart surgery between 18-36 months. He could also ultimately need to have a heart transplant in the future.Now at nine months old, he has been admitted in the hospital nine times. Cael may have spent a little less than half of short life in the hospital, but that hasn’t stopped him! He is home now and doing very well! Our heart hero certainly steals a piece of our hearts as we fight to keep his beating!
We are honored to be selected as the spokespeople for the Butler Heart Walkthis year. We are especially excited to be able to bring awareness about Heart Disease and specifically Congenital Heart Defects. Congenital Heart Defects affect 1 in every 100 babies and twice as many children die each year from CHD than all forms of childhood cancer combined! We encourage everyone to spread awareness about heart disease and to become active in one of the Butler County Heart Walks. Thank you. The Lewis Family
Saturday, October 12, 2013 -Butler Heart Walk -Butler County Community College – Main Campus
Sign up today by visitingwww.heart.org/butlerpawalkor calling 724-453-1004