3rd Family to Participate - Julianna Ladas

Hi, my name is Julianna Ladas and I wanted to share our story as the 3rd family to participate in the fetal intervention program at Boston Children's Hospital. And what a journey it was!

Our story begins back in March of 2003. At 25 weeks into our 4th pregnancy, during a routine ultrasound, we were told that the baby was "not cooperating" and they were not getting a good view of her heart so they wanted to send us to a hospital in Chicago for a level 2 ultrasound just to be sure all was good. On March 18, we visited Dr. Thomas Lannucci at Advocate Medical Group for what we thought would be an exciting day of a special ultrasound that would give us a better view of our daughter who we had named Maleah Lucile. We were crushed to receive the news that something was wrong and that we would need to immediately see a cardiologist to discuss what to do next. By Gods incredible mercy, we were able to get in to see Dr. Bettina F. Cuneo at The Heart Institute for Children in Chicago that afternoon. As we waited in the waiting room, we had no idea what to expect. We had two perfect little boys at home and after experiencing a loss of a son at 19 weeks of pregnancy, we were scared at what this meant for our family. Our worst fears were realized when we faced this doctor who informed us that Maleah had Hypo plastic Left Heart Syndrome and that her PFO valve was so small that the possibility was great that she would not make it to delivery. Over the next couple of weeks, we did everything we could to learn about the heart, this condition and of the surgeries that would be required to keep our daughter alive. There was so much uncertainty and we were terrified of losing another child but knew that it was best to stay level-headed, take in every piece of information that we could and be as prepared as possible.

We underwent an amniocentesis at the end of March to give our surgeons the best possible picture of our babies overall health so that there would be no more surprises at birth and we were pleased to find out that there were no chromosomal abnormalities and with the exception of the HLHS, she was healthy. But even that bit of news was short-lived as on April 3 during an ultrasound and echocardiogram with Dr. Cuneo, we were told that the PFO had almost completely closed and that our options were now down to only one.

And that option was a truly terrifying one. We were told about Dr. Wayne Tworetzky in Boston who was beginning this journey of intra-uterine surgeries in the hopes that tiny balloons could be inserted into the hearts of these sick little ones allowing them to survive to birth and to the first of three heart surgeries, the Norwood. We were told that our child's life could only be saved in Boston with this surgery and even then, the outcome was grave. Only two surgeries of this type had ever been done - 1 baby lived, 1 was lost. A 50/50 chance, nearly 2,000 miles from home!

By the following day, Dr. Tworetzky had personally contacted us and let us know that, should we decide to do the procedure, he could have his team together and ready for Wednesday, April 8 in Boston - could we get there by then? This was Saturday afternoon and, as Dr. Cuneo had told us earlier that morning, the time was now! We had no idea what to expect, how we would get there and how we would pay for this - all we knew was that we loved our daughter, and as any parent would, we needed to do whatever we could to save her life. We would move heaven and earth for our two boys, didn't we owe her the same? Saturday night at 7 p.m, packed into the mini-van with two boys and my mother, Tony and I set off for our journey to Boston. It seemed so surreal to be only the 3rd family ever to make this journey and armed with only a 50% chance, we were scared to death. But in our hearts, we knew that our little one had one chance and this was it.

We arrived in Boston on Monday night, checked our family into a hotel across the street and my husband and I checked in at the hospital. We met with Dr. Tworetzky and his team that evening and had several more tests done.

Maleah's situation had worsened even during our trip to Boston and we were told the situation was grave but the doctors were hopeful. Because of the PFO valve being nearly closed and the tricuspid valve now leaking, the doctors decided to go to surgery first thing in the morning. Armed with very real expectations clearly explained to us and an arsenal of spectacular surgeons and nurses, we went to surgery early in the morning. I had spent the evening feeling me sweet baby rattle around inside and praying that this would be the answer to helping her to live to birth. When they brought me in that morning, I was so thankful to Dr. Tworetzky and the team, fully understanding the incredible miracle they might achieve but feeling a peace that even if things did not go as hoped, this was one more step in their journey and that hopefully, someday, there would be no more mothers facing the death of their babies due to HLHS.

When I awoke from surgery, I was told the procedure went very well and that I should think about the future and having a baby as ill as Maleah would be. It was the first time since the diagnosis that I really was able to see a birth and future ahead of me. Unfortunately, an hour later, during an ultrasound to check the baby's heart, we were told there was no longer a heartbeat. We had seen enough of these ultrasounds that we knew before the nurse even said it out loud. The staff was amazing. Ginny Silva will forever be in my heart. She cried with us and soothed us with her knowledge and loving kindness. It is a moment I will never forget because it was the beginning of an incredible journey. We chose to donate our daughter's body to the hospital so that they could try to find out what they could have improved on and learn from the surgery. I was induced late that evening and delivered a beautiful baby girl the next afternoon. Her life with us was so short but so powerful. As a pioneer of this surgery, I can look at each of your stories and see the success that has come from her little life.

Without surgery after surgery, these doctors could not have learned and improved this process and we would not be seeing the success rate that we are today - just 6 years later. She did more in her tiny life than most of us do in our lifetime. What the doctors learn through each success and failure is helping to save these wonderful babies and give the families facing this a hope that was just on the horizon when we faced this challenge. I quietly rejoice with delight each time I hear of a little one whose life was saved and who has gone on to be a smiling, giggling and healthy child. Praise God. I pray for each of you facing this trial and pray that you know that while the journey is so frightening, there is so much hope. In those moments when your chest feels so heavy you can barely get a breath and your legs don't seem to want to hold you up and it seems that the pain is winning - Remember those who have gone before you and the incredible miracle that is possible and stand tall and brave - for yourself, for your baby and for those coming after you.

Today, 6 years later, we have 3 wonderful boys who brighten our days and make our life meaningful. Kaden, our third, was born 1 year after Maleah's due date and, even though, we still miss our little girl, we know that he would probably not be here had she survived. God works in our lives bringing about such joys. We may not see them in the journey, but we can look back and see his hand clearly.

We pray the same for each of you.
Tony and Julianna Ladas
Nicholas, Brennan and Kaden