Indiana was born April 17th, 2019 at Newton Wellesley Hospital after an uncomplicated labor and delivery. Her apgar at birth was a 9 and on the outside everything looked great. That afternoon when the resident pediatrician arrived, we asked if we could have an ultrasound done to put to rest any lingering concerns we had regarding her heart; earlier in my pregnancy a routine ultrasound at 20 weeks showed what looked to be an enlarged aorta, which there was nothing to be done at that time except to have another ultrasound done once she was born. We watched through the large window of the nursery while Indiana laid there very quietly observing the technician and after about an hour, she was back to my room and then we waited..
The resident doctor on call walked into our room and I could tell something was not right judging by her facial expression. I was pretty sure she was about to deliver us news we were not prepared to hear. She explained to us that our hours old baby has a congenital heart defect called a VSD, a ventricular septal defect. Simply put: there was a hole in her tiny heart.
There are moments in your life that you never forget- this was one of them for us. Having never heard of this defect before, it was bit surreal for us and we tried to process this news as Indiana was moved to the Special Care Nursery for observation. It was difficult as we watched our tiny baby hooked up to machines with various wires that measured her vital signs. Thankfully, Indiana remained stable through the night with a follow up echocardiogram the next morning, we would meet her pediatric cardiologist Dr. Benavidez with a lot of questions.
Our first visit to MGHFC’s Pediatric Cardiology unit was great, from checking her vital signs to the EKGs to the echocardiograms, Indiana breezed through it all; always observing the staff with (mostly) calm curiosity. Dr. Benavidez’s and staff got a kick out her wild untamed hair that would stand up straight without any help. Everyone was patient, kind and took the time to answer all questions that we as new heart parents had. Joanna, the registered nurse and Kateri, the nurse practitioner, are so warm and friendly. Every time they walked into the exam room, we felt the warmth and support.
Dr. Benavidez, Indiana’s cardiologist, became one of our favorite people immediately, having all the qualities we could ever ask for in a doctor and it is clear that he loves what he does. Every time he sees Indiana, we see this big smile on his face and it’s like he’s known her forever. Indiana responded to him right away, as he became a familiar face every other week leading up to her surgery. He carefully explained her diagnosis: that the 7.5mm hole will not close on its own, she would need open heart surgery and what to expect in the months to come as ideally she needed to be at least 12 pounds in weight and 6 months old. He also told us what to watch out for while Indiana was home with us such as congestive heart failure symptoms. Anytime we’d send out a message to him with a question or concern, he would instantly get back to us that day always leaving us feeling relieved afterward. Unfortunately at 2 ½ months, she was deemed failure to thrive as her left side of the heart became enlarged and was at the beginning of heart failure so the date was pushed up to July instead of October.
In mid July, Dr. B introduced us to the team that would be coming from Boston Children’s Hospital and would be performing Indiana’s open-heart surgery. Indiana’s surgeon, Dr. Fynn-Thompson, heading the surgical team is one of the people we cannot thank enough. When we first met him, we came away from the meeting with confidence that our daughter was going to be in great hands. He spoke in detail of what the day of surgery would be like breaking down each step so we would know what to expect. We had also had a brief but important meeting with the anesthesiologist, Dr. Schure, another critical member of the surgical team. Dr. Schure was excellent in explaining in detail from beginning to the end what each member of the surgical team would be doing. After speaking with her, we felt comfortable knowing that she would be the one I would hand my daughter to carry her into the operating room that morning.
The morning of surgery was a anxiety filled ride into Boston that lessened when we were greeted by familiar faces that included Dr. Fynn-Thompson and Kateri as Indiana was having her vitals checked. After doing the very difficult task of handing over our daughter to Dr. Schure, we continued to watch through the doorway as Indiana observed the surgical team from Dr. Schure’s shoulders, seemingly unbothered by her surroundings. We could tell that at three months old, she was comfortable with the people who would be literally holding her life in their hands and that were going to take good care of her for the next few hours.
And take care of her they did! After a very long 3 hours or so word came down to us that she was out of surgery and she did great! After spending time in recovery, she would be moved to the PICU. The four nurses that were in charge of her care during the PICU stay were Melissa, Diana, Cristin, and Julia; wonderful, amazing angels in disguise. The level of care given to Indiana was outstanding and they deserve the highest of praises. The nurses made our stay so much more bearable and for that, we are grateful. It was difficult watching Indiana recover from major surgery covered in wires and tubes, surrounded by machines keeping her alive. We were so impressed by the entire team’s dedication to keep Indiana as comfortable as possible.
We cautiously held our breath as we watched Indiana pass each step to be able to leave the hospital with flying colors. Thanks to her PICU medical team at Mass General, she was able to go home at 4 days post op rather then the 7 to 10 day stay. They gave us easy to follow instructions for home care including bathing, pain management and other recommendations. Indiana’s physical change after her surgery was astounding – she simply began to thrive and we were thrilled!
Her first post op appointment back at the pediatric cardiology office was positive one, the echocardiogram revealed that the patch used to repair her hole looked great and not leaking. She was already gaining weight at a faster rate and her EKG showed a normal heart rhythm. Indiana’s medical team were happy at the results and Dr.Benavidez said, “See you in three months!” the longest stretch we’ve ever gone in seeing him. To a heart parent, that’s a GREAT sign because it means their heart warrior is doing well.
Words cannot express the gratitude we feel towards Newton Wellesley Hospital, Mass General Hospital For Children, Boston Children’s Hospital and the David Ortiz Children’s Fund. Each has, in their own way, given our daughter Indiana the chance to live a longer and happy life. We get to watch her play and grow up with her big sister Quinn, which makes our hearts filled with joy. We know there are babies out there with congenital heart defects that don’t have such a happy ending. This experience has inspired our family to become fierce advocates for the congenital heart defect community. We are in the process of starting a Massachusetts State Chapter for Conquering CHD (formerly known as The Pediatric Congenital Heart Association). Our family is dedicated to give back to the CHD community with the same kindness, support and care that was given to us from the beginning of Indiana’s life.