This will be a long post, but the Cliff Notes version is that today's appointment could not have gone better!
We got to the Pediatric Cardiology Department at U of M about 7:45 am. We got checked in and were started with the ultrasound/echocardiography before our scheduled 8:00 appointment. The ultrasound lasted nearly two hours. They looked at the heart in great detail to determine exactly what was wrong and what was right. The baby was very active and spent some time not cooperating. When they were finished, we went into a conference room with the Pediatric Cardiologist, the nearly finished with school Pediatric Cardiologist and the Nurse Practioner.
The problems with the heart are as follows:
- The tricuspid valve (the valve between the right atrium and right ventricle if you are trying to remember your heart diagrams from health class) did not form and is basically missing (Medical Term - Tricuspid Atresia). There is a little flap of tissue, but it is not a valve and does not work.
- The right ventricle is undersized.
- There is a hole between the left and right ventricles (Medical Term - Ventricular Septal Defect or VSD)
- The Aorta and Pulmonary Artery both exit the right ventricle (Medical Term - Double Output Right Ventricle or DORV). The Aorta is supposed to output from the left ventricle.
As I have posted earlier, problems with the right side of the heart are much less common than problems with the left side. Today we found out that problems with the right side of the heart are easier to fix and are actually better. The Pediatric Cardiologist said that she would choose right heart problems over left heart problems any day! Health class reminder - The right side of the heart sends blood to the lungs and the left side sends blood out to the body. The right side doesn't pump with as much pressure. So, the strongest part of the baby's heart is fine.
Right now, the baby's system is plumbed all wrong. There are three surgeries required to fix the problem:
Surgery 1 - Performed 1 to 7 days after birth
This surgery gets some blood to the lungs at the proper pressure. Our baby will need a reduction in pressure to protect the blood vessels. This will be acheived by narrowing the existing Pulmonary Artery or by putting in a tube to bypass the Pulmonary Artery. Recovery time in hospital is 10 days to 4 weeks.
Surgery 2 - Performed 4 to 6 months after birth
This surgery sends the blood from the top part of the body directly to the lungs, bypassing the right side of the heart. This blood is now going to the lungs with the normal pressure from the pumping of the left ventricle. Recovery time in hospital is about a week.
Surgery 3 - Performed 18 months to 3 years after birth
This surgery will now send all of the blood directly to the lungs, completely bypassing the right side of the heart.
We were able to ask all of the questions we have been wondering about for the past 8 weeks:
Q: Will the baby be born in Ann Arbor?
A: That is the plan. Then we will both be in the same place. If things go too fast and the baby is born in Grand Rapids, he will be sent to Ann Arbor, but it would not be a huge issue threatening his life.
Q: Will he be taken by C-Section?
A: It does not sound like he would unless there are other problems.
Q: Will I be induced early?
A: If so, not by much unless there are other problems. Because this affects his lungs and his heart, the better formed and more mature his lungs, the better.
Q: What is the success rate with this process of surgeries?
A: Around 75% successful.
Q: Will we get to hold him after he is born?
A: Most likely. He will get checked out right away, but the way he is plumbed, he will have enough oxygen when he is born. The problem will be that the blood going to his lungs will be under too much pressure and will cause damage if left untreated.
Q: What are his chances of having a heart attack before birth?
A: No more than a normal baby.
Q: Can I breast feed him?
A: Yes. He will not get regular milk or formula until after the surgery sometime. I can pump and they will feed him with that when he is ready for milk and when he is well enough to start eating, he can be breast fed.
Q: What is his future prognosis?
A: If he survives the surgeries, he will probably look and act completely normal (ignoring the scars and weird family related quirks of course). He will be able to play recreational sports, but may tire more easily. He probably won't be an Olympic athlete, but seeing as we don't have any in either of our families - this is not a big concern.
We met with the U of M Congenital Heart Center social worker as well. She told us about what lodging options were available and gave us some other useful information.
I will still go to my doctor in Grand Rapids and check in with Ann Arbor as needed. My next Grand Rapids appointment is June 8th and the next Ann Arbor appointment is July 1st.
The next Ann Arbor appointment will include the following:
- Meet with genetic counseling
- Meet with U of M obstetrics people
- Have ultrasound with obstetrics people
- Have echocardiography with Pediatrics Cardiologist
- Meet with surgeon
- Meet with social worker
The cool part is that they scheduled all of this Ann Arbor stuff on the same day so we can get all of this done in one trip. The people at U of M seem to be very caring and willing to work extra hard to make it as easy on us as possible. Phil and I were VERY impressed. This baby will have some maize and blue outfits even if we are Spartans!
We thank God for the wonderful news and our wonderful support. Thank you for all of your prayers! We are so blessed to have so many wonderful people supporting us. When my Mom had cancer, she always said that there was one benefit. Knowing that people love you and care for you and your family is the best medicine there is!
If you want to learn more about all of the heart stuff with pictures and without my commentary, go to the following website: