New Diagnosis...

I thought I would update everyone on our little guy. We went to Seattle Children's for our first appointment to get an echo which is like an ultrasound just better equipment and they only focus on the heart. They found that he does not have Tetralogy of Fallot, he has a more severe defect called Pulmonary Atresia. This is where the heart is missing the pulmonary valve and sometimes missing the actual pulmonary artery. This artery is what takes blood down to the lungs. He also has ventricular septal defect, the hole between the lower chambers. At the time the prognosis was that he did not have a main pulmonary artery or valve. By default his body has grown collateral vessels off of his aorta to help feed the lungs when he is born. In the echo they saw three. He did say that there very well may not be enough material to work with to help the blood to get down to the lungs, but it was hard to tell until he was born. The Doctor also said that sometimes there will just be a bunch of little vessels that they can not do anything with. So far that is all we were seeing. We were feeling pretty low and not very hopeful.



I got a call a few days after getting home from my O.B. and he asked if I would participate in a clinic that they were holding that Friday. The clinic was to help doctors become more aware of how to find heart abnormalities through echo or ultrasound. They had been planning for months and had for whatever reason had the ladies that were scheduled fall through. Honestly I didn't feel much like it but figured if it would help I would go ahead and do it. In the back of my mind I was hoping maybe they would find the pulmonary artery or something more encouraging. The doctor that did my echo was from Stanford and his specialty was echos. He found a pulmonary vein which meant that there would be some blood getting to the lungs. He also found the pulmonary artery(cross our fingers!) He said it was small but better than not one at all. The body still tends to grow the little vessels off the aorta to help make up for the lack of size in the pulmonary artery. They told me to have hope and said that with his condition they recommend we go to Stanford to receive our care. There is a Doctor Hanley that has paved the way with a new type of surgery called unifocalization where he takes all the little collateral vessels and makes a larger one so that the blood flow is better. In our babies case we are just feeling like Dr Hanley is the way to go. We had our referral sent off yesterday and should have our appointment scheduled soon. We feel the Lord is leading us along. We also have a good friend that is a pediatric anesthesiologist resident and happened to have worked right with Dr. Hanley this summer and will work with him again starting in December. He has been really helpful as well with this whole process. They also said that he is doing well in the womb and has plenty of oxygen. I really feel he is happy right now in his little body. It was so cute when they did an ultrasound on him he was opening and closing his mouth over and over, I could just imagine him babbling.



When the baby is born they will do testing and determine exactly what he has to work with. If there is a pulmonary artery they will put a shunt in it within about a week after birth. The shunt is a mesh wire that will help enlarge it and encourage it to grow. If there is any unifocalization that needs to be done that will happen when he is 3-6 months. They said he will probably have some type of surgery every 6 months to a year until he is 4 or 5. As far as the Pulmonary valve goes he will receive one when he is a babe, age 4, teenager, and one when he is an adult. We realize though there is quite a road ahead and many risks involved Heavenly Father is with us. This has been a roller coaster, but we are on for the ride and are hanging on.....Thanks again for all of the prayers!

Here is a link that has a diagram of a normal heart and one with Pulmonary Atresia and VSD. The site also has information about the defect.

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/cardiac/pa.html