We’ve had many people ask for the full story of Holden’s journey… It’s going to be difficult to condense so much down, but I’ll do my best. Holden was born on 2/2/10, and on the outside, he was perfect in every way. Our pediatrician came in the morning before we were released and told us she heard a murmur in his heart. He appeared to be fine, and he showed no indications of anything major going on, so she let us take him home with the promise that we’d see a cardiologist the next day. We went to Dr. Pearse’s office in Frisco as instructed, where we expected her to tell us he had a small hole or something else minor and easily fixed. Instead, about halfway through the echo, she stopped and told us that we needed to sit down, because there was a serious problem. They saw that his pulmonary artery and aorta, the two major arteries that carry blood in and out of the heart, were backwards. This is called Transposition of the Great Arteries. Usually, this is an immediately life-threatening issue, and she wanted him to be taken by ambulance to Children’s Medical Center in Dallas. Once we got to the hospital, they were a little confused, because most babies born with TGA are born blue, and unable to survive more than a short time without surgical intervention. After hours of echocardiograms and other tests, they found that Holden’s TGA is congenitally corrected, because two chambers of his heart are also backwards, which kind of directs the blood flow to where it should be. They also found that his pulmonary artery was tighter than usual, with some extra stuff growing in it- this is called pulmonary stenosis. He also had a couple of holes in his heart- a VSD (which was small and eventually closed on its own) and an ASD. Since his blood flow was somewhat normalized and he seemed to be doing fine, with no outward signs of anything wrong, they decided to let him come home and wait to do his surgery until he was a little older and bigger. Many people have asked why he needed a surgery at all, if his heart was functioning even backwards… He still needed the surgery because the part of his heart that’s pumping blood to the body is only meant to pump blood to the lungs. The muscle is compensating for now, and putting out more than it should, but we knew eventually it would wear out, and he would go into heart failure. We had no way of knowing when that would happen- it could have been a few months, it could have been years. Once that happens, there is no surgical fix, so we knew we’d need to do the surgery before it was too late.
We had frequent echos and visits to Holden’s cardiologist, and we got to keep him at home for nine months before the doctors and surgeons decided it was time to operate. He came in for his heart cathertization on Sept. 20, and his orginal surgery date was Oct. 18. His surgery got bumped when they had an unusual number of babies come in needing emergency surgery, and he was rescheduled to Nov. 1. Dr. Forbess is his surgeon here at Children’s, and he planned to do an Arterial Switch operation, to re-route the pulmonary artery and the aorta to the correct places. First though, he would need to core out the pulmonary valve to resolve the pulmonary stenosis before the switch could happen. We were told at our pre-op appointment (not before, which I’m still a little upset about) that there was a very small chance that he wouldn’t be able to core enough out of the pulmonary valve to do the switch. If the valve couldn’t be cored out enough, the pressures would have been horribly wrong once the arteries were switched, and Holden would have been worse off than before. Still, it was a very small chance, and we needed to try to do the surgery. The Arterial Switch is the go-to surgery for kids with TGA, and it essentially fixes them for life. We had to try.
Unfortunately, Dr. Forbess wasn’t able to clear the valve enough to do the switch and complete the surgery. He was as aggressive as possible, and Holden has a pacemaker now because he has complete heart block. His surgeon did everything he could to fix him, but it just wasn’t enough. He did close the ASD with a small patch, which was all he could do. He closed him up, and we were told that Holden would need to be placed on the heart transplant list immediately. That was devastating news, and I think the whole day was a blur for all of us. We found out later that he wouldn’t need an immediate transplant, but that it was likely in our future. It was a relief to have a little time, but the relief didn’t last long.
We were told that Holden should come out of the surgery the same as before, if not a little better because of the ASD being closed. However, after we extubated him and he started to wake up, he was coughing up blood. Nobody could figure out why it was happening, but he crashed pretty hard that night and had to be reintubated. He had serious pulmonary edema, and was basically drowning in his own blood and fluid. More than a few doctors and nurses told us after the fact that we almost lost him that night. I am so thankful I didn’t know that then, as I was already a basketcase. He was on the vent support for another week, and we tried to extubate him again on 11/9, my birthday. He didn’t last more than nine hours before the same thing happened again, and we had to reintubate him. This time, we knew something serious was going on, and we started looking at his heart rather than his lungs. Sure enough, he had new issues with his heart that were causing all of the pulmonary problems.
I won’t go into all of the details of the next month, because I could write a book about all of the problems and issues we had while he was intubated and knocked out. (Plus, from here on, I started writing in the blog, so you can always go back and read through the posts for more information.) He was in a drug induced coma for most of the month, to keep him from fighting against the support. At one point, the swelling got so bad that he didn’t even look like my baby anymore, and again the doctors told us later than he was almost gone. His organs were all failing, and nobody knew what to do for him anymore. We finally knew the answer to when he would need a transplant… As soon as possible. We started the process of getting him listed for a transplant that day, and he was listed within two days. He started out as a 1A on the list, which is the most critical. (He’s now one step down from that, a 1B.) The next day, we put a PD cath in his stomach to drain some fluid off of him and try and help his organs recover a little bit. We were amazed at the amount of fluid we were able to get out of his poor little body, and we were even more amazed by the difference it made. His organs eventually started functioning properly, and he got to the point where we were talking about taking him off of the vent. This was a miracle in itself, as we had accpepted that he would have to be on the vent until a transplant.
We were able to extubate him, although we’ve been back and forth on the vent. He’s gone back on it for short periods, but he always fights his way back off. He’s been through pancreatitis, on top of everything else, and he’s had various other issues going on, like the flash pulmonary edema he’s still prone to. Every week, every day seems to bring new problems and issues to the surface, and he remains a total medical mystery.
I think the most frustrating thing of all for me is that we brought him in here essentially healthy (at least outwardly), and he’s had every complication imaginable. And the worst part is- they didn’t even fix him. All of this would almost seem worth it, if we could leave here knowing that his heart is fixed, and he’ll live a long, happy life, just like a normal kid. That didn’t happen. That won’t happen. And I have to learn how to be okay with that.
But we know that he has the ability to fight for his life. We know that our Holden is in there… He’s had a few really good days among all of the bad, and I’ve been able to see my baby again, even if briefly.
He’s made it this far. He hasn’t given up, and we haven’t given up on him. We may not get to take him home until he gets a transplant, or he may improve so much next week that they kick us out. The thing with Holden is- you never know. I have to learn how to be okay with that too- the not knowing. I have to trust in our nurses, doctors, surgeons and GOD. I have to give it all up, and pray that the Lord sees fit to save my baby’s life once again… He hasn’t let me down so far.