written by Dana, Evan’s mother
Evan Henning’s story is one of beating long odds and defying expectations at every turn. He was born in Austin, Texas in August of 2011, and was born with six Congenital Heart Defects (CHD). We learned about two of them in utero at 22 weeks of pregnancy. At that time, Evan was diagnosed with Hypoplastic Left Heart Syndrome and a Common Atrium. We had a cardiac team ready for him to be born, so I was induced. I was in labor for 11 hours, and wouldn’t dialate above a 7-8. Also, Evan wasn’t descending as expected, so my fabulous OBGYN, Dr. Paul Bushart, suggested a cesarian section. He also thought Evan would crash upon being born. Had he crashed, we would have lost him. I heard him cry, saw him for a quick second, and he was taken away by the team to the NICU. He was the largest baby in the NICU weighing 8 lbs. 3 oz. On day 2, he was transferred to Dell Children’s Hospital to have a heart catheterization. They completely checked him out and found that he had four other heart defects: Total Anomalous Pulmonary Venus Repair (TAPVR), unbalanced AV Canal, Bicuspid Aortic Valve, and mildly Hypoplastic Arch. At four days old, Evan was flown to Children’s Medical Center in Dallas and he was admitted to the Cardio Vascular ICU. We also learned that he was not a candidate for the three-stage surgery, which is normally performed on patients with HLHS, as his valve was extremely leaky. Basically, Evan’s only option for survival was to have a heart transplant. Once we arrived at CMC-D we went through a rigorous interview process, and he was checked from head to toe to get him listed for a heart transplant. He was listed as a “1A”, as he was extremely critical.
At one and a half weeks old he had his first open-heart surgery to get his body ready for the long wait for transplant. It was called a Hybrid Norwood, as Dr. Kristine Guleserian placed bands on the pulmonary arteries to control the blood flow to the body and lungs. Dr. Vivian Dimas also put a large stint in his ductus arteriosis to keep it open. The surgery was very risky and touch-and-go, but he made it through. For several weeks he was extremely critical, but he fought hard and eventually healed from the surgery. We were told that he would never be off of oxygen before transplant, and he was on room air the day after Christmas. It was also said that he would never be stable enough to be admitted to the heart floor, and he was moved there at six months old. Lastly, we also learned he wasn’t a candidate for ECMO or the Berlin Heart, and if he ever crashed we would lose him.
My husband, Brian, was off work for three weeks, as we figured out how to navigate through Evan’s diagnosis and plan of care. So, we began our new “normal”. My husband went back home to go to work, and he came every weekend to spend time with Evan and me. I resigned from my full-time job, as I became a full-time heart mom. I created a daily schedule and routine, and that helped me to keep my sanity for months on end.
While Evan was in the CVICU he received physical, occupational, speech, music and massage therapies. He spent six months in the CVICU, and he continued to get stronger and reach milestones. At six months Evan was moved to the cardiac floor, and two and a half weeks later we got the most wonderful news. The entire Transplant Team entered his room, and I was told, “We have a heart for Evan!”. The next 24-hours were a whirl-wind, and we had a waiting room full of family & friends. At 5:30 a.m. we saw our baby boy’s face. His cheeks were pink for the first time ever! Our surgeons, Dr. Forbess and Dr. Guleserian, performed his heart transplant, along with reconstructing his pulmonary arteries, pulmonary veins and aorta. He came through the surgery and has not had any problems with rejection at all.
Overall, we stayed at the Ronald McDonald House of Dallas from August to Memorial Day weekend. The relationships and support we received from others at the RMDH, the hospital and through Mended Little Hearts of Dallas were, and still are, extremely important to us. It was the scariest experience to go home, as we had been so close to the hospital for so long. However, we eventually got used to caring for Evan.
We also found out that Evan had several other diagnoses. Among some of them are he is hard of hearing and wears hearing aids. He was born with microcephaly, and that has been the determination of his hearing loss. We really thought it was going to be a struggle for him to keep the hearing aids on, but he soon found out what effect they had, and he loves to hear! He also has two right lungs due to heterotaxy, and his left vocal cord is completely paralyzed. In the spring of 2017 he was diagnosed with ADHD and Autism.
Today, Evan is six years old and is in Kindergarten this year. He is learning to read, write, add & subtract, and he truly loves school. He has attended the Regional Day School for the Deaf Program at a local elementary school since PreK-3. He adores books, and he enjoys using his Tag reader to independently engage with his books in that program. He still attends physical, occupational and speech therapy. Evan also enjoys using the computer to play games involving some of his favorite PBS shows.
In February we celebrated his sixth Heart Anniversary. We are forever grateful to his donor’s family for making the decision to donate their child’s organs.
Each heart anniversary we celebrate is bittersweet; our most joyous occasion is also someone else’s worst moment.
That selfless decision, allows Evan to keep growing, thriving and to keep overcoming long odds and defying all expectations!