Molly’s Heart Story
|
Diagnosis: Hypoplastic Left Heart Syndrome
The Radiologist from the ultrasound place caught it. He told us that the mortality rate for these babies is high and she would more than likely die after birth (could be 2 hours, could be 2 years). My OB/GYN immediately sent us to a specialist, who was able to fit us in this afternoon. He confirmed the diagnosis and will be my delivery doctor, but was a bit more optimistic (she might live and will be in the best care). The delivery will be at St. Luke’s (from the link I posted in the first sentence), which is directly connected to Texas Children’s Hospital. After she is born, she will be transferred there for care. There is a slight up side. Fortunately, she has an anomaly. Her aorta, which should be connected to the deficient left ventricle, is actually connected to her right ventricle near her pulmonary artery. This is good because, in her series of three surgeries she will have to have, this is what they do in the first surgery (take the aorta and reroute it to the right ventricle). So, in a way, she is ahead. They did an amniocentesis on me today to confirm that she does not have any lethal chromosomal abnormalities that will ruin her chance for survival, before or upon birth. This type of defect is sometimes caused by such abnormalities. If she is clear of these, we hope to continue the pregnancy and keep our little angel for as long as God will allow. I know that she is being sent here for a reason and that she will teach us all something and leave a positive influence here on earth. We are fortunate to have so many wonderful people in heaven, waiting to care for her when she arrives. It will be my top priority to keep Colin (her toddler brother) central in our lives through this process and when she arrives. It is my goal for him to continue to feel loved, important, and fulfilled. I also want to keep our lives as normal as possible until the birth and after. May 20 – I am so excited that we are having a little girl. I dreamed that she was a girl all of the time. I keep reading stories from children with the same heart defect that are happy and healthy kids. I think the first year (if she is healthy enough to get through it) will be really hard, but it seems to get easier after that. So, I’m being optimistic. I am prepared for the worst, but hoping for the best. May 21 – Today, we went to an appointment with the cardiac specialist at Texas Children’s Hospital. She had a much stronger ultrasound machine and was able to tell us more. (I didn’t know what it was called at the time, but this was our first fetal echocardiogram. It is the ultrasound with all of the pretty colors.) The anomaly I spoke of before is proving to be a very positive aspect to her heart defect. I will try to explain what she told us. Her first of three surgeries will be MUCH less invasive than most children have. They will place a band around her pulmonary artery so that it is not under too much pressure (this is not open heart surgery; rather closed). This will be done about a week after she is born. She will be able to come home after they do this surgery. She is lucky and will not have to have a feeding tube like most children. We will still be waiting on the amnio results, in about 12 days, to determine if she has a lethal chromosomal defect. If everything is okay, we are scheduled for another ultrasound on June 25th, to make sure she is on track developmentally. We are definitely a little more optimistic after talking with the cardiac specialist, today. June 1 – We got the results from the amniocentesis test back, today. She has no chromosomal abnormalities at all… and nothing lethal. So, we can progress as planned and count on top notch service from TCH. Yay! The doctors have never seen a case exactly like ours, so she is getting a lot of attention. The cardiac doctor has already contacted the leading pediatric cardiac specialists at children’s hospitals all over the country to see if they can add to her knowledge. Our case was also presented at a small conference of specialists, at which point they figured out that there was no gap between her left and right atriums. They seem to think that an extra artery she has running behind her heart may be the only abnormal danger/problem. However, it could prove to be nothing. We will not know until she is a few years old. Anyway, I just wanted to share the wonderful news! July 4 – We had a couple of doctor’s appointments last week. They both went well and we didn’t really learn anything new. We also met with the surgeon. He was very nice and was able to give us a couple of answers we needed. Special notes: Like most people, I was afraid that it was something I did. The heart begins to develop very early in pregnancy, so it is hard not to feel like you did something wrong before you knew you were pregnant. I have been reassured time and time again that it is not anything I did and these things just happen. My husband lost his first wife due to a genetic disease which caused complications in her labor and delivery. Our son, from her, has a slight chance of having the same disease. When we found out that our baby girl would be sick, he fell apart. He is doing better now, but I have definitely had to keep him strong through this. The chief Radiologist that first caught the problem was not very sensitive to our feelings. He told us that she would die and immediately mentioned aborting. He also told me not to look at the internet, because my findings would mislead me in a positive way (i.e.: make me too hopeful). They even withheld my DVR of the ultrasound that I was supposed to get from my visit and asked me doubtfully if I would even like the pictures of the baby. I was like, YES! I was so mad. They had already given her a death sentence, which was wrong of them to do. My friend Julie, who’s daughter was also born with a heart condition said that each doctor will have their own opinions and a very different story. Your job, as a mother, is to sort through all of the comments and opinions and come up with your own concrete and positive outlook. To any expecting mother, who has just found out that her baby will have a heart defect: please stay positive and know that God, no matter which way you celebrate him, is with you and is listening. |
~Molly, July 2009 |
This is my journey, so far, as posted on our family website.