Have I told you about my Miracle Baby?
Exactly three years ago, on Mother’s Day, my oldest son was in Boston Children’s Hospital, recovering from his 4th open-heart surgery. Three short years seems like another life-time ago right now, and we are so thankful that our Elliott is doing so well. Below is a brief (but not-so-brief) version of his story, starting back in 2010.
(Trigger Warning: Lots of pictures to follow, some with graphic content of babies in hospital)
First Open Heart Surgery – 4 Months Old
When our son Elliott was three months old, he was diagnosed with a rare congenital heart defect known as a “double outlet right ventricle (DORV) and VSD” Essentially, his aorta and pulmonary artery were both coming out of the right ventricle of his heart (hence, double outlet). The “VSD” or Ventricular Septal Defect, was a large hole in his heart. The hole was allowing the oxygenated blood to flow into the aorta and out into his body.
Elliott had his first heart surgery on January 5, 2011 at the A.I. Dupont Hospital for Children, in Wilmington, DE. At that time, we found out that he was too little to undergo a surgical repair of his DORV. Instead, the surgeon placed a band around his pulmonary artery, which restricted the excess flow of blood to his heart. This procedure temporarily relieved Elliott’s congestive heart failure.
Second Open Heart Surgery – One Year Old
In September of 2011, on Elliott’s first birthday, we returned to A.I. DuPont (Nemours) for Elliott’s 2nd heart surgery. We were again expecting a full repair of the DORV and VSD (hole). Yet once again, at the last minute the plans changed. The surgeon was unable to do a full repair of Elliott’s heart due to the location and size fo the VSD.
Instead, he opted for the Glenn Shunt procedure – the first of two surgeries that would leave Elliott with a single ventricle heart. Elliott was scheduled to have the third surgery (the Fontan circulation procedure) sometime in the summer of 2012. (In the Fontan scenario, all of Elliott’s “blue”, un-oxygenated blood would bypass his heart completely and be channeled passively to his lungs).
In March of 2012, we decided to get a second opinion from Dr. Devyani Chowdhury, a local pediatric cardiologist with Cardiology Care for Children. Upon examining Elliott, she immediately questioned why we were going with “single ventricle” route, when Elliott had two good, working ventricles. We explained our story – how the surgeon at Nemours was not able to do a two-ventricle repair. She recommended that we take Elliott to Boston Children’s Hospital. She knew that they would push for a two-ventricle repair instead of the Fontan circulation.
A two-ventricle repair was a much more favorable option for Elliott. This would allow him to have a “normally” functioning heart with fewer long-term complications. Because of some issues with pulmonary hypertension (high pressure in lungs), the Fontan procedure would not have been a good fit for Elliott. His lungs would have been compromised and he would be at a greater risk for respiratory infection and complications. There are also many other risks involved with a Fontan circulation, including possible liver failure or heart transplant.
Third Open Heart Surgery – Almost Two Years Old
In August of 2012, we travelled to Boston Children’s Hospital in preparation for Elliott’s 3rd open heart surgery. Having examined Elliott’s records, the surgical team from Boston was 95% certain that they would be able to do a two-ventricle repair of Elliott’s heart. On August 1st, 2012, Dr. Christopher Baird operated on our miracle baby. After eight hours or so of waiting, we finally got word that the surgery had been successful! Dr. Baird was able to repair Elliott’s heart, giving him two working ventricles.
We are eternally grateful to our loving Heavenly Father who has been so faithful to us throughout this journey. God has graciously given us strength through each step of the way, and we are so thrilled with the way He has answered our prayers!
In the News!
In November of 2012, our family was featured in a special Thanksgiving addition of the Lancaster Newspapers. The article told about Elliott’s story and how thankful we were to have been the recipients of God’s kindness and mercy. There was a video interview as well! You can watch the video and read the article at THIS LINK.
Fourth Open Heart Surgery — Four Years Old
Two years later, when Elliott was four and a half years old, he needed to have his pulmonary valve replaced (it had calcified and was no longer functioning properly). The plan was to replace the valve using a heart catheter (going in through an artery) and not have to do an invasive open-heart surgery again. So back to Boston we went!
The heart-cath procedure was performed in the cath lab, but in the process, Elliott developed an aneurism (bulge) in his pulmonary artery. He was in a dangerous situation for a few days in the cardiac ICU. Finally we were told that he would need to undergo a fourth open-heart surgery to repair the pulmonary aneurism.
This was very unexpected, but God continued to give us peace throughout the whole time! Dr. Baird again performed the surgery. He was able to repair the aneurism, replace the conduit that had been put into Elliott’s heart during his previous surgery in Boston, as well as patch a small VSD (hole) that they discovered between the ventricles. In addition, they repaired a separation in his chest wall / sternum that had gradually separated since his previous surgery. The surgery went very well and we were thankful to be able to go home with peace of mind that the aneurism had been repaired!
Current Update (2018)
It has been three years since that last surgery. As I’ve been reading back over some of my journal entries, I am again amazed at what a miracle our little boy is! And how gracious our God is!
Elliott is doing great. He continues to see the cardiologist every 4 to 6 months for check-ups. He lives a very normal life for a very normal 7.5 year old boy!
It is likely he will need another surgical procedure (or two) at some point in his life, simply because the “parts” that have been implanted in his heart won’t last forever. He’ll probably need a valve or conduit replaced down the road. But we know that God, who has been with us every step of the way in this journey, will continue to walk with us and give us the grace and strength for whatever lies ahead.
I will end with a quote that has been meaningful to me over the years, from one of my favorite books, Hudson Taylor’s Spiritual Secret.
“The sweetest part… is the rest which full identification with Christ brings. I am no longer anxious about anything…for He I know, is able to carry out His will, and His will is mine. It makes no difference where He places me, or how. That is rather for Him to consider than for me; for in the easiest position He must give me His grace, and in the most difficult, His grace is sufficient. So if God should place me in serious perplexity, must He not give me much guidance; in positions of great difficulty, much grace; in circumstances of great pressure and trials, much strength? No fear that His resources will prove unequal to the emergency! And His resources are mine, for He is mine, and is with me and dwells in me.”
We are so very thankful for our miracle baby!
I recently (2022) posted a new blog post and podcast episode, sharing about God’s mercy in ours and Elliott’s life. You can read that post HERE.