This afternoon, shortly after writing the previous blog post about our appointment today, Dr. Walsh called to tell us he spoke with Dr. Tworetzky. He said that we do not qualify for the Fetal Aortic Valvuloplasty because we have twins. There are multiple risks and technical difficulties they aren’t willing to take. Dr. Walsh asked if there were any other teams that do this and he said he didn’t know of anyone taking on that risk. He mentioned the possibility of a team in Texas, Dr. Walsh called them and they said they don’t do this.
A wave of emotion came over us. That feeling of being suspended and stunned hit again. Adam and I both found tears welling up. Why did we have the high of this hope today to only find ourselves being dropped into the low of this news? I asked questions I didn’t ask earlier because of this earlier hope.
What are the chances that this will develop into Hypoplastic Left Heart Syndrome? -Very likely.
What are the chances of survival of each surgery? -It varies from child to child but mortality is much improved since these procedures began in the 1980s.
What do we do now? -Monitor the heart through fetal echocardiograms every 4 weeks.
Is there ANY chance that this damage could slow down and not progress to the point of HLHS, giving him the chance of having the Aortic Valvuloplasty after birth? – There is a small chance of this. Given the early detection of this and damage seen so far, this is unlikely.
I heard “small chance”. I am clinging to this even if it isn’t likely. We are raw, numb and extremely saddened and we are choosing to believe that this small chance is still a chance. Several people have messaged- God’s plan hasn’t changed. His presence and hand on this baby’s heart hasn’t left. I don’t know why we were given this glimpse of encouraging news, for it to be taken away so suddenly. Why? Only God knows, and I’m praying for Him to give us reassurance as we embark on this journey.
I joined a couple of Fetal/Infant Congenital Heart Defect groups on Facebook. I want to see how God is working in the lives of others around us. To read stories of encouragement. To hopefully share some of these stories with you, our village of supportive prayer warriors. I know God is still here. He’s still holding us in the palm of His hands.
Please continue to for us. Pray for strength and peace that only God can provide, which passes all understanding. Pray that he slows the damage to Baby A’s heart, that He miraculously opens his aortic valve and relieves the pressure in his left chamber. Only God can do that right now. This is a very Bold Prayer, but what is faith without the trust and belief in the things we cannot see and cannot understand?
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!
“Trust in the Lord with allyour heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight.” -Proverbs 3:5-6
I decided to start a blog based on the advice of a good friend, a prayer warrior, that has helped me in more ways than I can describe. It won’t be easy because it adds another layer of vulnerability, however I think it will be a great way to share our journey with close family and friends and allow us to ask for specific prayers along the way.
Surprises Every Step of the Way
After deciding we wanted to try for another child, Adam and I got pregnant surprising very quickly. I thought I was having symptoms of the Coronavirus (headache, feeling extremely tired and not great all around). After taking a pregnancy test, BAM!- the dark line showed up immediately. Fast forward to the first ultrasound appointment, which I attended alone since Adam wasn’t allowed to come with me, and we found out we were pregnant with TWINS! I cannot express the shock that this was and still is! I had conveniently forgotten that my grandmother had two sets of twin siblings, and that based on family history on the female’s side, this gave us increased chances of this happening. After the shock (and fear) settled a bit, we were then surprised to find out we were adding two more BOYS to our family! With my nausea and different symptoms this time around, we weren’t expecting that as well. Then, there came the anatomy ultrasound at 20 weeks. A surprise that made our hearts drop and immediately sent fear and panic through my veins.
Both baby’s anatomy and genetic testing had shown to be perfectly fine and on track up until this point. Even throughout this ultrasound, everything was looking great. Upon closer inspection of the videos of Baby A’s heart, my OBGYN and the ultrasound tech concluded that there was an abnormality with his heart. The gripping news of this, as I was yet again alone in the exam room, made me feel so out of control. I felt dizzy, couldn’t control my breathing and was desperately trying to figure out more information that the doctor couldn’t provide.
I walked back to my car in a daze. Making calls and texting family and friends grasping at something or someone’s words to hold onto. I was scheduled to meet with the Maternal Fetal Specialist several days later. We found out there that this “significant heart abnormality” consisted of labored left chambers with thickened walls and a narrowing of the aortic valve leading from those chambers. We were scheduled to meet with a pediatric cardiologist to have a fetal echocardiogram on November 6th. Faced yet again with not a lot of information, I googled what these symptoms may match up with and read some things that just sent me into such a panicked state. How terrifying, vulnerable, helpless and raw you feel in moments like this. Tears and the complete lack of appetite followed for the next few days. I found myself feeling desperate to not feel like that. To fight through this somehow to become strong for these boys and our family. To take care of myself. I messaged a couple of dear friends, who are so strong in their faith, to find some bit of comfort. I found so much more.
I have always kept my faith and relationship with God more private than public for sure. I have relied on my faith on many occasions throughout my life, especially when Aaron was going through his surgeries. The two years spent enduring unknowns and procedures with him, definitely ignited my faith in a new way. Trusting in God to put the right people in our path, the right doctors with the right care, etc. was no easy task. Once again I was faced with either relying on worry and anxiety, or relying on a deeper faith in who God is and what God can do. If you haven’t surrounded yourself with people who have a deep, strong faith and who are walking in their faith daily, you are missing out on a type of village you haven’t experienced before. When I say that their messages have breathed LIFE into me over the past two weeks, I mean God has truly transformed my emotional and mental mindset by speaking through these friends. I understand what it means to witness to others, and how this trickle-effect takes shape.
In the moments I read their messages, a peace and calm came over me that I can’t explain. Without making this initial post too long, I want to share some parts of the things they shared with me.
“He has you wrapped around His arms and I pray that you feel His comforts daily. Keep your faith strong. I am praying for a miracle. Praying, claiming that this miracle lies in Baby A’s coming days, weeks, months. Please Keep me updated I want my prayers to be as specific as possible.”
“We are going to claim that God has this, it is all part of his perfect and beautiful plan and that he has already orchestrated the outcome and next steps! I literally told myself every morning that God knew the outcome of every day and I just prayed for the courage and faith to continue knowing how loved my babies were and I was.”
“This will all be part of not only your testimony as a child of God, but it will be a part of baby A’s testimony. Going through this process and seeing your faith and God’s love transpire through this in front of your eyes, it will be a sentiment of how faithful God is.”
“God can do what He says He can do. I am who God says I am. I can do all things through Christ. God’s Word is alive and active in me”.
“God gives us the grace for each day as it comes and not before. He will give you everything you need to accomplish His purpose (not yours or someone else’s) for that day and that is sufficient. God will guard your heart and mind and give you the strength you need.”
I cannot tell you how much peace these words have brought me. I know God meant for these things to be spoken specifically to me and Adam and I have been able to share these words with a few others. The testimonies and the ministering that is taking place is already a glimpse at the bigger picture and purpose of this journey we have just begun. Adam has been amazing through every step of this. He has been a constant source of support, he has prayed over and over with me, and been a gentle reminder to put things in perspective and to be strong. He is a rock that I can’t imagine doing any of this without. He put things in a great way. He said- “We’ll have three happy boys, running around, playing with each other. If one needs a little more care at first, that’s ok. We’ll get through it.” I needed to hear that more than I knew.
Our fetal echocardiogram is this Friday at 9am. I am a big believer in prayer warriors and BOLD prayers. Prayers that proclaim and declare the power of God and His ability to provide blessings that seem impossible in our human eyes. I believe that with true Trust and Faith, praying bold prayers can be so powerful. I ask that you join us in our bold prayer for Baby A. “For where two or three gather in my name, there am I with them.” Matthew 18:20.
Lord, we come to You in prayer for the health and safety for this sweet baby’s heart. We know you are capable of miracles that we can’t understand or that can’t be explained. We proclaim and declare that You are capable of healing this baby’s heart before any intervention is needed. We pray that You do what doctor’s think isn’t likely or possible.
I know that no matter what this journey holds, these boys are His. They were His before they were ever conceived. He has them in the palm of His hand and knows the amazing plans he has for our family. We ask that you stand with us in prayers for these babies, this pregnancy and for baby A’s heart. We ask for prayers for strength during these appointments, and time of waiting. Pray for God’s presence, peace, and strength to be with us each step of the way.
I encourage you to read the story of this family who JUST had triplets. One of their triplets was facing impossible odds…BUT GOD! I actually came across this family’s story at the very beginning of this pregnancy, not knowing the news that would lie ahead. It has stayed with me ever since.
A post shared by Rachel Jenkins (@jenkins.triplets.and.toddlers) on
If you’re looking to be uplifted, here are some powerful songs I am listening to on repeat right now that have spoken to me and this current journey we are on…
We will continue to update as we walk on this journey. We are SO BLESSED to have each of you here praying for us, for Aaron, and for these babies. Your continued messages, calls, check-ins, etc. are helping to carry us through the tough moments. Thank you so very much!
Blessed With Boys 