One patient’s story: our baby’s multiple heart defects

Roman was born with several heart defects, which required intensive medical attention and surgery

My husband Tim and I had been unsuccessfully trying for another baby for some time. Then, right around Mother’s Day, we got the present we’d been hoping for, a positive pregnancy test. The first few months were filled with joy and anticipation, but a scheduled ultrasound during my 19th week changed everything. The sonogram showed our son had a heart defect. As an intensive care nurse married to a physician, I knew how dangerous this could be. When they administered my amniocentesis— a test for genetic disorders that may be the cause of our baby’s heart condition—I was so numb that I didn’t even feel the needle go in me. The results showed no traceable cause; a twist of fate with no scientific reason.

At a time that should have been filled with giddy anticipation, my last month of pregnancy was shrouded in sadness and fear. As my due-date got closer we met with a cardiologist who did an extensive fetal echo on our unborn child. She told us that our baby had Transposition of the Great Vessels (the aorta and pulmonary arteries were transposed), Tricuspid Atresia (his heart’s tricuspid valve didn’t form properly), a couple of atrial septal defects and one large ventricular septal defects. I had never been so scared in my life. The doctor did her best to explain what the long list of medical terminology meant, but the more symptoms she listed the more I became focused on a single question: can anyone fix my baby?

We went home that night and researched the Internet for the best place to have his surgery. Children’s Hospital Boston repeatedly popped up as the number one children’s hospital for cardiac surgery. Boston was a long haul from our home in Florida but we were willing to do anything to help our son.

Ron Lacro, MD

Once in Boston we met Dr. Ron Lacro, a Children’s cardiologist, who did his own fetal echo. He was kind, compassionate and very sensitive to the pain we were going through. He explained to us that our son would need three open heart surgeries. We tried to enjoy the rest of the year, but as the holidays approached it took every bit of energy to put on a happy face for our other children knowing that on January 5 we would be headed for Boston.

We arrived in Massachusetts in early 2009, and were lucky enough to be placed with a wonderful host family for the two weeks until my C-section could be performed and our son Roman Alexander could be born. When he finally arrived, I was devastated that I couldn’t even hold him after the birth because he had to be rushed directly to Natal Intensive Care Unit (NICU.)

While I was in the recovery area a nurse rolled my baby into my room in a large incubator so I could see him just for a moment. Even with all kinds of monitors attached to him I could see he was beautiful! I’m so thankful for the nurse who gave me that precious moment where I could touch his hand and tell him how much I loved him.

Roman was just 8 days-old when he had his first heart procedure. We walked him to the surgical unit, but all I could do was cry because I didn’t know if I’d ever see him again. We sat in a waiting room for what seemed like days, until our son’s surgeons, Dr. Pedro del Nido and Dr. Sitram Emani, came into the room and told us that everything went well. We were elated. My husband and I sat there with tears streaming down our faces while they talked. The differences between happy tears and miserable ones are huge— a difference I’m glad I got experience that day.

Everything was going as planned until the day we were set to leave. As we were gearing up for the trip back to Florida I gave Roman a routine diaper check, and almost fainted when I saw his diaper soaked with blood. Within minutes, his surgeons were assessing him and found an infection in his colon. The discovery meant the second phase of his surgeries needed to be done early. It was terrifying but immediately after the procedure Roman bounced back and seemed so full of life.

For Roman’s first birthday we had a huge party. I learned that birthdays are not about presents and cake, but celebrating life. There aren’t words strong enough to describe how thankful I am for everyone at Children’s Hospital Boston; they not only took care of our son, but they also took care of us.

Today, Roman and family are doing much better

Roman is now 19 months old and a happy baby. He’s just learned to walk and is getting into all kinds of mischief. He may not know it yet, but he has taught us all to be thankful for every day that we have. We will be back in Boston in January of next year for his last heart surgery and while I wouldn’t say I’m excited for the trip, I know there is no other place in the world we would rather have to go for our son’s care than Children’s.

12 thoughts on “One patient’s story: our baby’s multiple heart defects

  1. Great story Shan. Thanks for sharing. and giving us the greatest gift of all, the beautiful little man Roman. We are all very thankful for him and his parents and sisters and brother. love to all Mom Catenaci

  2. Amazing. I’m so glad your son is doing well. We are headed to Children’s next week for our son’s open-heart surgery to repair his CHD. Dr. del Nido will perform his surgery as well. From what I’ve heard he is amazing. I will be thinking about your family!

  3. Thanks for sharing your amazing story. I was born with TGA and VSD in 1965 when babies didn’t survive such things. Thanks to the folks @ CHB, I am now 45 years old, married and a mom of an 11 year old boy. It’s a place of miracles, as I’m sure you know.

  4. So happy Roman is doing well! My son (now 16) has the same combo of defects (with his transposition, it was complicated by a hypoplastic aortic arch). He is also a Children’s Hospital, Boston patient. He currently plays sports (including hockey) and is doing wonderful. Remember that the sky is the limit!

  5. So happy for you and your family. Children’s hospital Boston is amazing! Dr Emani is my daughters surgeon as well, She has HLHS and just turned 2 last month. We have one more surgery for her as well… when she is about 3 years old.

  6. I’m so happy to see how Roman is. It’s so thrilling to see how drs. can work on such little hearts! Enjoy every moment with Roman. I’m thankful for Children’s Medical Center in Dallas and Fort Worth. They were wonderful with my precious daughter for 29 years, Lacee LaRue!

  7. Hi roman family I’m so happy to hear your son is doing well.I myself have have a 2yr.old named brandon that was born with a couple of heart defects he was diagnosed with a rare condition called TOTAL ANAMOLOUS pulimonary venous the bronx said children’s hospital was his last resort after two open heart surgeries and I WAS SO SCARED BUT THEY SAVED HIS LIFE IN 2009.THEY ARE THE BEST AND THEY MAKE OUR LIVES AS PARENTS THAT MUCH EASIER.HE’S GOING TO BE FINE AND CAUSE A LOT MORE MISCHIEF AS SOON AS HE’S ALL BETTER BELIEVE IT.

  8. My 3 year old grand-niece Melissa is a Children’s cardiac patient who went undiagnosed until she was 6 weeks old and almost didn’t survive the 90 min. ambulance ride to Boston. She has tri-cuspid atresia and went through the same 3 surgeries as Roman. Dr. Emani was an absolute G-d send! So patient and careful to explain everything. Melissa’s final surgery was just before her 2nd birthday. Though she had a minor complication a month later (fluid build up which meant staying a long weekend at Children’s to get it drained), she has been completely perfect since then. She jumps, climbs, runs, dances, sings and pretends like any other very active pre-schooler. If she doesn’t pull up her shirt to show you her scar (which is fading nicely), you’d never guess what she’s been through. Brace yourself for the Roman to come!

  9. Yes, Boston is truly the BEST!!and so is Dr. delNido..My daughter also had TGA,ASD,VSD, and bicuspid aortic valve she had her surgery at a week old and she is doing great. She is a spunky ,sassy 9 year old,plays sports basketball,softball and cheerleading..Best of luck to you and your family!

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