Hypoplastic Left Heart Syndrome, or HLHS is a congenital heart condition that has no known cause. The left ventricle, which pumps blood to the body from the heart, does not develop. The condition is usually accompanied by aorta issues as well. The result is a heart that can pump blood to and from the lungs but not out to the body. In infants the problem is sometimes not caught right away because the ductus arteriosis remains open for a little time after birth. This ductus thingy is a tube that runs from the pulmonary artery (blood going to the lungs from the heart) to the arteries going out to the body. It means that at birth, and before birth, blood is supplied to the body via this duct, cause you know…the lungs aren’t being used in the womb. So once this ductus starts to close, the infant gets blood starved in his body. This causes the body’s organs, which want the oxygen transported by the blood, to go through alternate metabolic processes in an attempt to stay alive. These processes produce acid: hence why his blood acid was high (later we would discover that it was very very very high, not quite lethal but on the edge).
Without intervention such as surgery or a heart transplant the condition is 100% fatal. However since the 70s a series of surgeries have been developed that children get over the years. The first is done very soon after birth, the next one after several months, and the one after that in 1 to 3 years. Currently the outlook for patients making it to adulthood is 85%.
And now you know what I did after I did a Google search and an article reading or two. My wife had gone to get ready at this point. We wanted to be able to go when he did.
Right after the news from the doctor my wife and I held each other. I didn’t cry. I can’t tell you why I don’t cry in general, but I usually don’t. Typically when I do they are happy tears, and when they are sad it’s typically at a funeral. But not all the time. I do know that the more people that are around me the less likely I will cry. It’s not a macho thing. It’s not a strength of will thing. I don’t fight back tears when other people are around. I just don’t have the inclination to cry. Maybe inclination is the wrong word, I’m not sure what word is, but tears don’t come on by knocking on the door and asking if they are okay to come inside. Tears explode through the wall and announce their presence, like the Cool-Aid Man. I had no Cool-Aid Man at that moment. So I sat there and held my wife. That was a strength thing. I know she needed me to hold her and the God’s honest truth is I needed to hold her. After a little while a nurse came in, she said they had started to get the ball rolling on transport and had notified Cooks. They had been trying to get ahold of my wife’s doctor for discharge but had so far had no success. They were sure there would be no problem since they had been willing to discharge us the day before but we had opted to stay, thank God for that.
If we hadn’t stayed, the nurse wouldn’t have noticed his color getting a little blue and we wouldn’t have been in as good position to make the move to Cook’s. A lot of that 15% mortality rate I mentioned earlier is due to children that went home and who only made it to the hospital days after their ductus arteriosus closed. If you are a parent at home you might not notice the problem quickly, they turn a little blue, get lethargic, and start grunting. You take him or her to the ER, they aren’t baby doctors, maybe they have a NICU, maybe it takes many hours for people to figure out what is going on and to get your baby where he or she needs to go. I am not confident that Micah would have lived had we gone home the day before. That thought threatens to overcome me with fright occasionally. I am glad we stayed the extra day.
So the wife went to change from her hospital gown to real clothes. I got busy texting, facebooking, and googling. I wanted to know what we were up against here. Then I needed to let everyone else know. Again, needed. Letting other people know what was going on was important to me. I’ve seen the power of prayer at work first hand, I know what it can do, it was important for me to reach out to get that power on Micah’s side. It was also important to me to get everyone up to date. I knew from the comments I had seen that other people were worried. Better to know what to be worried about than to be in the dark. I called my dad, he was almost there. I posted an update on Facebook. I waited to text my coworkers, some of them were on days and some were on nights so I didn’t want to wake anyone up, I waited till 6pm to text them.
Soon after that Janel was ready, but we had no word on what was going on. It had been forever, or 45 minutes, which at the time might as well have been forever, since we had had word about Micah’s condition. I went in search of a NICU nurse. It didn’t take much and I actually got the doctor as she was going by the NICU doors. She told me the transport was on the way, it would take 15 minutes or so to go from HEB to Cooks and the transport team would stop by our room with Micah before leaving.
Dad showed up. There were a series of hugs exchanged. I sort of explained what was going on to him, more focusing on the “what we are doing now” and less on “what the medical issue was.” Then the nurse came and said the transport was ready. They came to the room, we walked outside, I thought it was going to be a, see him on the way past kind of thing. They told me, “No, no, let’s go in the room.” We all retreated back into our hospital room. He was in a glass box, five people wearing professional looking blue jumpsuits wheeled the gurney holding the glass box into our room. Teddy Bear transport. He was passed out, or knocked out more likely. He was intubated as well. It was a little scary. No wait…it was intensely terrifying. Numbing though, so instead of freaking out we held his hand for a second and then he was off.
We stood around looking at each other for a minute or two. I was about to hug my wife and say goodbye and drive to the hospital alone, because she hadn’t been discharged yet. Luckily at that moment the nurse walked in and discharged my wife. It took a minute, there were a number of instructions she was obligated to read out loud to my wife. And then we were off.