Attention Heart Warriors! February is CHD Awareness Month
During February, we think a lot about hearts. Our little ones make heart-shaped crafts, heart-shaped balloons and cookies are in all the stores, and there are hearts on all Valentine’s Day cards. With everyone seeing and thinking about hearts this month, it makes sense that February is also Congenital Heart Defect (CHD) Awareness Month. (CHD Awareness Week is February 7-14.)
This is Eli Julian. He was diagnosed with Pulmonary Atresia. Pulmonary atresia is present from birth and is a form of CHD in which the pulmonary valve does not form properly. The pulmonary valve is an opening on the right side of the heart that regulates blood flow from the right ventricle (right side pumping chamber) to the lungs. The Mayo Clinic says that CHD is one of the most common types of birth defects. It affects 1 in 100 babies, with approximately 200,000 cases diagnosed per year in the United States alone. Treatments include medications to lower blood pressure and control the heart rate, heart devices, catheter procedures, and surgeries. Serious cases may require a heart transplant.
Eli Julian’s mom, Nathalie Toribio, is a good friend of mine. She shared his story (and her story) with us to help spread CHD Awareness.
“Let me tell you our story of Baby Eli Julian, our heart warrior. Our story is similar to other babies, children, and adults who have CHD. They are all heart warriors.
It began with pregnancy. Pregnant! I remember hearing the doctor confirm the happiest news ever. At one of my first appointments, our nurse kept taking pictures of the ultrasound. When the nurse was done she said all she needed to do was show the results to a doctor. I was met by a genetic counselor who asked that I follow her to her office. Walking down the hallway behind her, I was numb, unaware, unsure if I should call my husband. She told me they had concerns, even though we had no family history of complications. We did blood work tests and a fetal echo appointment.
The blood work all came back negative. I celebrated and didn't worry about the fetal echo appointment they were requiring (even though there was no family history of problems). I went to the appointment. Then we were told the diagnosis: Pulmonary Atresia, CHD. We were told our son's life expectancy, we were told multiple heart surgeries, possibly a heart transplant. I had dreamed of being a sports mom, but the doctor said our baby could lose his breath just tying his shoes, and that sports wouldn't be an option. My pregnancy – my life – changed. Multiple fetal echoes, fear at every appointment, and researching this new condition became part of my new normal.
Once it was time for delivery, the hospital became our home (and continues to be our second home). Eli was taken from my side almost immediately after he was born in order to save him. I didn't touch his hands until hours later. He was in the hospital for one month after birth and then went back for procedures. They saved my baby's life, for that I am forever grateful. We met many other families like ours, ate together, cried together, celebrated together. We acknowledged the parents walking in hallways with a smile, watched The Lion King over and over again, and made life long new friends with the nurses. As hard as it was, the hospital and staff made it easier.
Eli needed a shunt to keep him going after birth, his first procedure. When doing all the tests to go in and place the shunt the doctors were surprised to find bleeding in the head and blood clots. To this day there is no answer as to why that happened, how and when the bleeding occurred, or even what effects the bleeding had/or will have on Eli. In addition to his pediatrician, Eli has a neurologist team, a hematologist, and has even met with an optometrist, which is why our outings are regular hospital visits.
The surgery was an emotional roller-coaster even before it began. We were told to prepare for surgery; Eli wouldn't be allowed to eat. But then something would come up and his surgery would be postponed. This happened four times, and it was hard! All the nurses and doctors warned us to prepare ourselves to see our son differently. They weren't referring to the scars but more to the number of tubes Eli would have and how swollen he would be. The second surgery was just as hard. Eli didn't react well to the anesthesia. In fact, a nurse spent her entire 12-hour shift standing next to me, forcing Eli to breathe. The second heart surgery came with “glen headaches.” It was horrible to see Eli in so much pain. But his surgeries went well, thanks to the miracle hands of the doctor and his staff!
We still aren't done. This isn't it. Eli will need more catheters, as well as the third heart surgery between ages two to five years old, and that still won't “fix” him. You see, there is no cure. But together we can make a better life for Eli, we can make each day incredible. Today while you go to work, walk, clean up, work out, I ask you think of how much you can get accomplished before you get tired. Then think of the heart warriors, who do all the same things on “half a working heart.” See, I told you they have super powers, our heart warriors.” – Nathalie, Eli’s Mom
Eli Julian just celebrated his half birthday at the beginning of February. He is now 6 months old. If he could talk, he might say, “I'm 1 in a 100! I fight with every beat of my heart, the half that works.”