Dear Family and Friends,
We were waiting to send out another update until we had finalized some decisions and had more to report. It has since become obvious to us that we need support and prayer in making these decisions -- they are not coming easy to us. Since our last update, we've consulted with the surgeon at Stanford, had another set of electrocardiograms with the CHOC cardiologist and had multiple visits with our Perinatologist.
*Dr. Hanley (Stanford Cardiothoracic Surgeon)-* In mid Dec. we had a phone consultation with Dr. Hanley (a CD of our echo cardiogram and images were sent to him in Nov.). From our research and our Cardiologist's recommendations, Dr. Hanley appears to be the best surgeon for our particular heart defect. He has done over 400 similar surgeries (of significantly varying degrees) in the last 15 years and currently has a 90+% survival rate. He confirmed the diagnosis made by our Cardiologist (Tetrology of Fallot w/ Pulmonary Atresia) and said that based on the images, he did not feel that our baby had a pulmonary artery as well (something our Cardioligist suspected). This will not be confirmed until the baby is delivered. Once the baby is born, it will undergo a Cardiac Catheterization procedure in the first couple days of life. This involves putting the baby under anesthesia and inserting a material into the blood and running a catheter into the heart so that blood vessels can be identified accurately. If there is blood flow through the pulmonary artery (provides blood from the heart to the lungs) , surgery will need to be done within the first week to keep that vessel open (it naturally closes after birth). This surgeon believes in repairing the artery and the entire heart defect at the same time. Other surgeons believe that it's best to insert a shunt (a plastic part that keeps the artery open for blood flow) during the first week and then do another surgery several months later to repair the other defects. Dr. Hanley believes that there is a 10-15% chance that our baby will need surgery the first week. He believes that it is likely that our baby has collateral arteries (small arteries that the baby developed to compensate for the missing pulmonary artery). In this situation, he would stabilize the baby and send it home until the baby is 3-4 months old when the repair surgery would be optimal. Of course, if our Cardiologist determines that the baby is in distress, surgery could be done at any time during the first 4 months. Because of the collateral arteries, our repair surgery is extremely complicated. The surgeon has to connect the small collateral arteries together to make 1 functional pulmonary artery and then connect that to the heart and each lung. Then place a conduit between the Right Ventricle and this newly created vessel to the lungs, and patch the hole (VSD) between right and left ventricle. He classifies it as a 9 or 10 in severity/complexity out of a possible 10. During our consultation he informed us that it would be best to deliver the baby at Stanford so that if surgery is needed the first week (10-15% chance), so we would not need to transport a fragile newborn which can be more dangerous than the actual surgery.
*2nd echo cardiogram with Cardiologist -* We met with our cardiologist at CHOC again last week. At this time she still does not see any evidence of a pulmonary artery. Rather, she sees 3 small collateral arteries that appear to connect from the heart to the lungs. There could be other collaterals as well that are smaller and not visible (the more collaterals there are, the more complicated the repair is). There is a remote chance that there could also still be a pulmonary artery, however there is no evidence of that at this time. She informed us that we could still deliver at CHOC since surgery the first week is unlikely but the surgeon at CHOC is not qualified to perform our repair surgery. She referred us to another surgeon at Children's Hospital LA for a consultation. We are meeting with him on Jan. 21st.
*Perinatologist *- All of our regular appointments show that the baby is doing well in the womb and is growing accordingly (finally some good news). As of today, the baby is estimating a weight of over 3 pounds and all other organs appear to be fine. We will start fetal monitoring twice a week at 32 weeks and continue weekly ultrasounds to monitor growth and development.
We are currently in our 30th week. We need to decide on a hospital/surgeon ASAP. After our consultation with Dr. Hanley we felt that it made sense to deliver the baby at Stanford. However, since then, we've vacillated.
*The pros we've identified are:
* Dr. Hanley is the most qualified surgeon for our condition and we want our baby to be in the very best hands. * Lucile Packard Children's Hospital (Stanford) is the #11 children's hospital in the country and specializes in dealing with heart defects.
* The cons we've identified are:
* They want Trisha up at Stanford between 36-37 weeks of pregnancy - much sooner than we expected. She would likely travel up there with the twins and her mom. Erik would stay home with Shayna and Noah for a week or two until the due date got closer. They would likely induce at 39 weeks.
* The Ronald McDonald house that we planned on staying at (only $10 per night) will only accommodate a family of 4 and availability is not guaranteed. This means that we would need to rent a hotel room for at least part of our stay.
* We only have 1 family car and would need to rent a minivan for 3-4 weeks for Stanford.
* Based on the last echo cardiogram, surgery is not likely the first week so we would deliver the baby and return for surgery at a later date. We could deliver at CHOC or Children's Hospital LA which would be a lot less complicated logistically.
We've already switched to a PPO which is quite expensive but will allow us the freedom of choosing our doctors and hospitals. So the decision is truly ours. We don't want any of our decisions to be made from a financial standpoint. We would spend any amount of money necessary to save our baby's life. That being said, we don't want to use our resources unnecessarily. So, we would really appreciate it if anyone has connections that can help us out with our travel expenses should we decide to deliver at Stanford. If you know anyone at the following companies, please let us know:
/Airlines -/ Southwest and American have the most availability with flights from Orange County to San Jose. Erik will likely fly back and forth 1 or 2 times with Shayna and Noah to help keep their lives normal with school/sports. Since we aren't certain of any dates, we can't purchase tickets ahead of time at lower rates.
/Car Rental -/ we will likely need to rent a minivan for 3-4 weeks and would appreciate a reduced rate.
/Hotels -/ We would need to stay in a hotel for 3-4 weeks up at Stanford for delivery and again for the surgery likely this Summer.
*Decisions, Decisions... *
Our choices seem to be
1. Deliver at CHOC, and run the risk of immediate surgery being required (less than 15%)--which means transport to Stanford in an airborne NICU. If there is no need for immediate surgery--we go home and travel to Stanford sometime in the first 3-4 months for surgery. 2. Deliver at CHLA, and run the risk of immediate surgery being required--maybe by the CHLA surgeon--maybe transport to Stanford--depending on what he has to say when we meet with him on the 21st of this month.
3. Deliver at LPCH, and incur the logistic challenge--this seems to be the best scenario for the baby if surgery is required right away.
Sorry for the long/detailed email. We wanted to share our experiences so that you can pray with knowledge. Please pray for direction as there are so many options and unknowns. And please continue to pray for our baby. We have a very long and difficult road ahead of us.
With love,
Erik & Trisha
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Please donate to Ronald McDonald House