My son Brendan was born in August of 2010 at St. Joseph's Hospital. We are from Flagstaff, AZ and went home after about a week in the NICU there. The docs there had done an echocardiogram just to check Brendan out and called a week after I had gotten Brendan home to say that there might be something wrong with his heart, but maybe it was nothing so I scheduled another echocardiogram for the end of October in Flagstaff and forgot about it.
In October of 2010, I took Brendan into his wonderful cardiologist, Dr. Rockow, in Flagstaff, thinking that nothing was going to be found and he'd be fine and we'd just go home. I was wrong. Dr. Rockow seemed concerned as he started going through the echocardiogram and eventually just stood up and muttered that he'd be right back and he needed to make a phone call to Phoenix. When he came back he said that Brendan likely had endocardial fibroelastosis (EFE) which is a fairly grim diagnosis because it is where the left ventricle is surrounded by muscle tissue to help it pump, however, eventually it can start to squeeze the ventricle shut and generally is fatal by the age of 2.
The other thing he mentioned was that I would need to take Brendan to Phoenix to St. Joe's where the pediatric heart team was and they would look at him because he had blood flow going into his left coronary system, but he wasn't sure where the blood was coming from (aka. the blood is supposed to come from the aorta out the coronary artery and through the vessels into the body).
In Phoenix, with help of a really nifty CT scan, it was determined that Brendan had a very, very rare defect called ostial atresia of the left main coronary artery. Brendan had no flow or very restricted flow from the aorta into the left main coronary artery. What Brendan's heart did was grow collateral arteries off the right coronary system that hooked into the left side and essentially the right side of Brendan's heart was providing all of Brendan's blood flow to his entire body. Remarkable? Yes. Scary? You betcha.
A Close Call
Brendan had his first heart surgery in November of 2010 to attempt to patch the left main coronary artery into the aorta. For whatever reason, the scar tissue on the aorta started to be a problem and Brendan went back into surgery in March of 2011 to fix the three stenosis along his aorta. Finally, on a sunny day on April 11, 2011 we had come down for a routine heart catheritization, no big deal, it was to be an in and out procedure and all would be fine. Haha.
For some reason, when they started the procedure Brendan coded, and not a quick code either, full on for 38 of the longest minutes of that team's lives. Everyone available from the pediatric cardiac floor at St. Joe's did compressions, one after the other, and the anesthesiologist used the bag to help him breath. Eventually, just as they were about to call him done, Brendan came back, no rhyme or reason and they were able to stablize him and finish the procedure.
At this point they were worried and had called Dr. Nigro back from a confrence because the general consensus at that point was to do a coronary artery bypass graft (CABG) because the patching at the coronary artery was narrowed to the point it was no longer effective. Brendan is one of the youngest patients in Arizona to receive a bypass; to be quite honest, I thought they were just for old people. We finally got to go home and the bypass worked for eight wonderful months.
A New Heart is the Only Option
On December 27, 2011, we were at home when Brendan fell over and seized up (due to lack of blood flow to the brain). I could not get him back alone so I called 911. Brendan was med-evaced from Flagstaff Medical Center to Phoenix Children's Hospital and has been here since. The docs finally had to set me down and offer Brendan the chance of receiving a heart transplant. There were no more options for my son and his rare and frustratingly complicated heart. I agreed and we went through the process and on January 19, 2012 Brendan was placed as a 1A (top tier) on the UNOS list to wait for a heart transplant. Brendan would not be coming home until he received a heart and the 5th floor CVICU became our new residence.
I can tell you that I slept on a bench for at least 4 or 5 nights out of the week in the CVICU for the first several months. I am a single mother and I would have to go back to Flagstaff every weekend to see my older sons and work delivering papers. I can tell you that you don't get food here at PCH but the social workers have their ways of helping you with food vouchers. Brendan and I would walk the halls constantly, mostly because he hates to stop moving more than anything in the world. The nurses finally determined that it takes 246 steps to do a full lap around the unit and if you do it 20 times, this equals to about a mile. I have walked many miles here.
I also started to reach out to other families, a lot of the time it was other heart families but I didn't even mind providing support to other moms and dads on other floors. We're all stuck in the nightmare together, no matter what our kids are sick with and we might as well get along and make each other's days brighter. I have cried with other parents, and I have laughed too. It's hard to be human in a place like PCH, but giving even a second of your day for another parent, even on the elevators, can mean all the world to a parent who doesn't know what to say with all the bad medical news they're being given by the doctors.
I often baffle the staff because I'll start talking about patient families that have been long gone, but I couldn't just sit there and not care. Just because I knew Brendan was in heart failure, didn't make it important to help others and I hope that if there is anything that Brendan will remember of this is that he saw how we brightened other people's days. He could give looks, but was also quick to touch fingers with you or smile or shake his tiny mohawked head at you or even give a great giant dinosaur screetch that would let everyone on the floor know that he was there and awake.
A Chance at Life
On June 2, 2012, Brendan got his heart transplant. He came back on ECMO (which is essentially the mobile version of the bypass machine they use in the OR) and he was on a ventilator. I thought I could handle it, but it was rough. I walked around in a fog for a few days and it's been a rollercoaster ride since. I relocated all of our stuff, and his older brothers down here to an apartment [in Phoenix] and we are anxiously awaiting our orders to go home. He will be on a special medication pump because he is one of the rare few kiddos that has to take weird meds for pulmonary hypertension that he developed probably around his second surgery, due in part to the EFE. He will also go home on oxygen and a feeding tube as well but at least he is alive.
I think he has the best doctors and nurses in the country working on him and looking after him here at Phoenix Children's Hospital. Dr. Nigro and Dr. Pophal have been instrumental in Brendan's chance at new life and I know that he will make them proud. He has touched so many hearts here and every nurse, security guard, food service person and cleaning person to set foot in the CVICU knows and loves him as if he were their own. There are so many people rooting for him and knowing he'll be better than ever as he grows and honors the donor who allowed him to survive.