We had a very long fetal echocardiogram at the Greensboro location for Brenner Children’s Pediatric Cardiology and met with a wonderful pediatric cardiologist, Dr. Michael Walsh. He explained that what they are seeing is exactly as what we were told earlier. Instead of Baby A having one of the most severe heart defects, Hypoplastic Left Heart Syndrome, he has what is called Critical Aortic Stenosis.
The Difference Between the Two
Critical Fetal Aortic Stenosis
When critical aortic stenosis is present in the mid-trimester fetus, the left ventricle becomes dilated and dysfunctional. As a result, there is less blood flow through the left heart contributing to a halt in the growth of the left ventricle. The growth of Baby A’s left side has not been affected yet, however it will likely stop growing as the weeks and months progress due to the pressure and scarring that occurs because of the very little blood flow not getting through the aortic valve.
Hypoplastic Left Heart Syndrome
In HLHS, the left side of the heart is critically underdeveloped and can’t effectively pump blood to the body. Instead, the right side of the heart must pump blood to the lungs and to the rest of the body. It requires three specific surgeries after birth and involves more risk eventually to the liver and other organs. An eventual heart transplant later in life is a possibility.
Why Baby A’s heart hasn’t evolved into HLHS yet and what can be done…
Instead of Baby A’s left chambers starting out very underdeveloped, the narrowing of the aortic valve has created pressure in the left ventricle, causing some scarring and some blood flow backup in the left atrium, causing this area to become enlarged. In HLHS, the eventual size and length of this left chamber would diminish and become completely ineffective. If we can avoid further damage, and keep both sides, this reduces the amount of procedures and invasive surgeries he will need to get his heart to function in the best possible way.
In my initial reading about Baby A’s symptoms, I came across aortic stenosis and the potential in-utero intervention that could take place. I knew that it wasn’t performed on a lot of babies because of meeting certain qualifications. Today, Dr. Walsh mentioned that he feels that Baby A would be a good candidate for this procedure called Fetal Aortic Valvuloplasty. I immediately felt a sense of hope. This is the only heart surgery for these issues that can be performed before birth and WE might possibly qualify for it!
This procedure is performed at only a few places in the US. It is a very specialized procedure and you must meet certain qualifications to be considered. The location Dr. Walsh suggested is in Boston, Massachusetts at the Boston Children’s Hospital and the primary doctor that would perform this is Dr. Wayne Tworetzky. Dr. Walsh would normally be meeting with Dr. Tworetzky and other cardiologists at a conference right now, however Covid has changed those plans and he is meeting with him and others virtually. I didn’t realize how rare of a chance this could be. He only refers 2-4 babies a year to Dr. Tworetzky for consultation on this procedure. He isn’t sure if our qualification would be affected by the fact that we have twins. I am hoping that the fact they are fraternal and in their own sacs will help in some way. Here are the reasons he feels that Baby A is a good candidate.
- There must be some blood flow from the left chamber into the aortic valve. Though it isn’t a lot, Baby A does have this flow.
- The size/length of the left ventricle must be big enough or long enough in size and his is.
- The other functions of the heart must be in good condition, which his are.
This procedure involves administering anesthesia to me and the baby. An ultrasound is used to guide a catheter with a balloon on the end through the uterus, into the wall of the baby’s heart and is inserted into the aortic valve. It is carefully filled with air to widen the flaps of the aortic valve to allow blood to flow more easily. The balloon and the catheter are then removed. I would go home that evening or the next day and be able to resume regular activity.
Dr. Walsh is calling Dr. Tworetzky today and asking him to review our fetal echocardiogram over the next couple of days. He will then get in touch with us next week. IF he agrees that we qualify for this procedure, we would then likely fly to Boston for this procedure very soon. Dr. Walsh did say that Dr. Tworetzky could also say that waiting until 23-24 weeks would help incase of preterm labor, since that is a risk. We will have to see what he says in our phone conference next week.
How God has been here the entire time…
Instead of feeling fear and dread through Dr. Walsh’s explanation of what is going on, I felt hope. God and his angels were with us and are still with us every step of the way. Instead of feeling unbearable anxiety, my eyes immediately were turned to His guidance and plan this entire time. Here are some amazing glimpses of God and how He has had us in the palm of His hand each step of this journey thus far.
- I was told by my Maternal Fetal Specialist that I have a very “smart obgyn” and yet again today, Dr Walsh said, “Your primary obgyn is very savvy to have spotted this”. What is amazing is that I switched to this doctor at 25 weeks pregnant with Aaron due to not getting great care from a previous obgyn. It wasn’t an easy step to make, given this was my first pregnancy, but I felt God leading me to make that move. God was orchestrating the RIGHT person to help me and these twins back when I was pregnant with Aaron. HIS plan was in the works before I even knew I needed His help. A large percentage of fetal heart defects are not caught before birth and largely overlooked. Dr. Walsh said today that it could have been very easy to say, well these chambers are about the same size and blood flow looks ok and then move on to other organs. Dr. Lowe at Physicians for Women in Greensboro and the ultrasound tech were placed in our lives for a reason!
- We now know these things in advance and therefore we can be in the appropriate hospital (Likely Levine Children’s Hospital in Charlotte or at Duke) for our delivery. Can you imagine the patients that have babies with unknown heart issues that crash after birth and they aren’t in the best place for the best care??
- God made this appointment for 2 weeks after our appointment with Maternal Fetal. We were worried about the timing, however because of the wait, we were able to meet with Dr. Walsh. He is only at this location about once a month. His relationship with Dr. Tworetzky and huge amount of knowledge of this condition is invaluable. What an amazing blessing to be with him today!
- We have the hope of a procedure that many do not get the chance to take advantage of. IF we qualify, we will be able to give Baby A a much better chance of less-invasive surgeries after birth and less risks down the road. I think of the parents that didn’t know about these issues before birth, and therefore never got the chance to even see if their baby could qualify for this.
Praying Bold Prayers
We continue to ask that you pray with us about this new information. It is a lot and can feel overwhelming. We know that God has this under control though and will be with us every step of the way. Our new Bold Prayer that we are asking for is…
- First…To qualify for this procedure.
- For a safe journey to Boston.
- For each doctor and nurse that is involved in this procedure.
- For a successful procedure that greatly improves the condition of Baby A’s heart.
We are not stopping our prayer for complete miraculous healing before birth. God is capable of that for sure. However, we want to acknowledge this amazing, encouraging possibility that God has revealed. We want to spend the next few days seeking His guidance and praying about His plan for us. We know there are risks with this procedure. I didn’t elaborate on that because there are risks no matter what, especially if we turn down this option. We know we would have doctors perform intervention after birth, so the timing isn’t important. We want to give this baby’s heart the best chance possible with God leading the way. Thank you for your amazing support and love. The messages, gifts, and prayers have brought us to tears and have carried us through this. You have no clue how God is speaking to us through EACH of you!