She is going to put us in contact with UNC hospital's Chaplain, who takes care of newborn death situations. He can help us to figure out how to make plans for Brady's burial, in case he doesn't make it. It's definitely surreal trying to plan for the possibility of your baby's death, but we definitely need to do it, because I do not want to have to figure that stuff out while grieving for my son. That would be horrible.
Diane is also going to put us in contact with a pediatric cardiologist. The cardiologist will be able to do an ultrasound to look at Brady's heart and give us a more accurate diagnosis of the heart problems and what treatments may be necessary after birth. Diane also told us that UNC hospital has a Palliative Care program, which specializes in treatments of newborns with severe conditions, and specialists for newborn care.
Because UNC has all of these specialists and facilities, we are going to deliver at UNC instead of WakeMed. Diane is going to put us in contact with UNC's Labor and Delivery department, so that we can register there and start discussing our birth plan and treatment plans for Brady. We will also be able to meet with the various specialists who can help us once Brady is born. Diane said that I can continue to see my current OB office even if I decide to deliver at UNC, but I might decide to switch to the UNC OB office, so that I am meeting with who will deliver Brady.
After meeting with Diane, we decided to get another ultrasound, so that we could have a second opinion on Brady's problems. It was so great to see Brady again. I wish I could do an ultrasound every day. He was moving around a lot, just like last Monday, and he just looked so perfect to me. It's so hard to imagine that all these things are wrong with him. The technician showed us the blood flowing in the heart and showed us where the holes are. I asked her to look at Brady's brain to see if he had any indication of Holoprosencephaly, which is the condition in which the forebrain doesn't divide into 2 hemispheres. This defect seems to cause some of the most severe issues, so if Brady doesn't have this problem, I definitely have hope for him. The technician said that it doesn't look like Brady has this defect, which is great.
The technician also looked at Brady's spine and thought that the splaying of his spine started at the L4 vertebrae, which is really far down. The farther down the splaying starts, the better, because it causes less damage to the rest of the body. So that is good.
After the ultrasound, we met with a perinatologist (meternal-fetal medicine specialist) to discuss the findings. She said that Brady's heart issue is pretty bad; worse than what we originally thought. She drew us a picture of a normal heart and a picture of Brady's heart to show us what the issues were (see picture below). Basically, his Right Atrium is bigger than it should be and his Right Ventricle is smaller than it should be. Also, there is no wall between the Left and Right Ventricles, so blood is mixing between the 2 sides, which isn't good because the Right side takes care of un-oxygenated blood and the Left side takes care of oxygenated blood, so if they mix, then you have a bunch of semi-oxygenated blood.
The Right side is supposed to pump the un-oxygenated blood out through the pulmonary artery to the lungs to get oxygen and then the Left side is supposed to pump oxygenated blood out of the Aorta to the rest of the body to distribute the oxygen. So, if the Left and Right side have semi-oxygenated blood, then the body isn't getting the amount of oxygen it needs. She also said that it looks like the pulmonary artery and Aorta never split into 2 branches like it should, so it looks like there is just one branch coming out of the heart.
Because of these major heart issues, the doctor suggested that surgery may not be an option, and that we probably don't want to risk a c-section because that would impact future pregnancies for me. She said that we would really need to consider what the purpose of doing surgery would be. If the surgery would just be extending his life a few days or weeks, the pain and suffering Brady would go through may not outweigh the additional life he is given. However, we also don't know if we would be able to extend his life for significantly longer than that, such as several years.
Since very few T13 babies make it to a year, it's unlikely that Brady will make it, but what if he is one of the ones that can make it to a year? That is the dilemma we are faced with. Do we just spend time with him after he is born and let God take him when his body gives out, or do we try to fix his conditions with the hope that he will make it for a significant amount of time? We plan to meet with a lot of specialists over the next few months to help us make that decision, but the ultimate decision-maker will be Brady's condition after he is born.
After hearing how bad Brady's heart looks to a non-cardiologist, we kind of thought that if Brady's condition is really as bad as it sounds, it would make the situation easier. However, after a few hours of letting it all sink in, I got really upset because the only way I was able to deal with all of this last week was because of the hope I had that he might be able to make it. If we were starting to operate under the assumption that he probably wasn't going to make it, then I was going to start becoming very depressed.
After speaking with a friend and reading some stories that people from the T13 Yahoo Group sent me, I began to get more hope. Many people said that some of the issues that doctors found in their babies during an ultrasound either didn't exist or weren't as bad when their babies were born. One woman mentioned that babies without Holoprosencephaly seemed to have a much better chance of making it. And some said that their babies had several heart defects, but they didn't end up affecting the baby much or they were fixable. Also, babies have a way of defying the odds sometimes and fighting to make it.
Based on all of this, it really began to give me hope for Brady and made me want to fight for him again. So we are going to meet with as many specialists as we can over the next few months to get a better understanding of his condition and make preparations for surgeries once he is born. We are still going to wait to make a final decision on the surgeries until we see how he is doing after birth, but we want to make preparations ahead of time, in case we decide that he is strong enough to handle the surgeries. So I'm feeling a lot better about everything now and continue to feel hopeful every day that Brady is a fighter and will make it.
Because we feel that he is a fighter, we have decided that his middle name will be David, from the biblical story of David and Goliath. That David fought against the odds and never gave up, and that's how we feel Brady will be. Every day, I continue to write letters to Brady to tell him what we did that day, and Paul reads to Brady every night from one of his favorite childhood books. Story time is such a special time because Paul really gets to spend time with Brady.
This weekend, we had a great time at Virginia Tech. We went tubing on the New River on Saturday, and it was super relaxing and really great alone time. Brady really enjoyed the trip :) Below is a picture of his ultrasound from Friday. It's kind of blurry, but at least it's something. I can't wait to see him again.
Please continue to pray for us, that we make the right decisions that are best for Brady. And please pray that Brady will continue to be strong and will be able to make it to birth. We can't wait to meet him.
1 comment:
Love the name David and your reasoning behind it. I also love seeing the ultrasound pics :) Keeping you all in my thoughts!
Post a Comment