CHaD HERO August Specials:
• Save $5 on registration with code HERO22 through August 31.
• Increase your impact! Thanks to the generosity of The Jack & Dorothy Byrne Foundation, all CHaD HERO participant funds raised from August 5 through August 31 will be matched 2-to-1 (up to $200,000)!
Meet 2022 Kid HERO Mira!
A couple days before Irma, a category 4 hurricane, was set to hit my city of St. Petersburg, Florida, I was closing up my house and got the phone call I never dreamed I would get. I was almost 10 weeks pregnant and found out my baby had tested positive for Trisomy 21. I knew I had heard of it and knew it was one of the things that the genetic blood test looks for but I found myself quiet on the phone. My midwife had said, “Renee, your baby girl has Down syndrome. If you haven’t evacuated, we’ll make an appointment after the storm for you to have a consult with a geneticist and have an anatomy scan. Don’t worry, we will take good care of her.” I thought, surely she is mistaken and the results are inaccurate or maybe my results were switched with someone else’s results by mistake.
The next couple nights, we were so very lucky that the storm downgraded to a Category 2, but the whole time I wasn’t scared of the potential flooding or damage or the howling wind and rain outside my door. I was scared that I wouldn’t be able to provide the life and love for my child that she needed and deserved.
After the storm had passed and my husband and I had begun to accept the fact that our daughter would have Down syndrome, we had our meeting with a geneticist. There we learned that we had a 14% chance that we would have a child with Down syndrome. Following the meeting we had the anatomy scan where they look for “markers” of Down syndrome. The ultrasound tech was pretty chatty but quickly became quiet. She excused herself and came back with another nurse and perinatologist where the three of them were focusing on one spot in particular, the baby’s heart. It was then that the first two holes in her teeny, tiny heart were found. We were told they didn’t know what it was or if she would be able to survive. We left with the heaviest of hearts. The Down syndrome diagnosis was suddenly the easy part. Now we were concerned if our sweet baby would even make it.
At the next appointment we had a fetal echocardiogram that lasted about two hours. We were then told that most babies with Down syndrome have some sort of congenital heart defect, our baby just happened to have a rarer one associated with Down syndrome, Tetralogy of Fallot. Tetralogy of Fallot (TOF) is a combination of four congenital heart defects; a ventricular septal defect (VSD), pulmonary stenosis, a misplaced aorta and a thickened right ventricular wall (right ventricular hypertrophy). For the rest of my pregnancy, I was seeing either a fetal cardiologist, a maternal fetal medicine specialist or my OB almost every two weeks.
Our daughter, Mira (because she was our ‘Miracle baby’), was born at 36 weeks. She was 5 lbs. 14 oz., 19” long and the most beautiful thing I had ever seen. We were able to take one picture before she was whisked off for multiple tests and scans to determine if she needed TOF repair then and there. I remember telling my husband to not let her out of his sight at any point and to keep our baby safe. What I really wanted to say to the brand new, first-time dad was, “Stay with her in case she doesn’t make it before I can see her again.”
Luckily, Mira did not need immediate surgery, but was in the NICU for three weeks due to her low oxygen level from the TOF and difficulty feeding. We were finally able to take her home, but continued to see her cardiologist on a regular basis.
At 2 1/2 months old Mira underwent her TOF repair, which was an open heart surgery that lasted almost nine hours. It was the longest and scariest nine hours of our lives. In that surgery she had several holes patched, her pulmonary valve was opened, her aorta was put in its correct place and the narrowing of her pulmonary artery was opened up. She came through beautifully and was able to come home a week later, however there will still be more surgeries in her future.
Soon we were able to resume her weekly therapy sessions for occupational therapy and physical therapy. Hypertonia, or low muscle tone, is common in people with Down syndrome. This, combined with the inability to be on her stomach for 12 weeks following her TOF repair surgery, meant that there was a lot of work to try to strengthen her muscles in different ways.
Five months after her surgery Mira was doing wonderfully, when her oxygen had started to go down and she was becoming more and more lethargic. It was then that my sweet baby girl had to have her first visit to the catheterization laboratory where she had more narrowing of her pulmonary artery opened up and had two stents inserted. The stents were 8 millimeters in diameter and her arteries were only 2 millimeters in diameter! Almost a year later, on New Year’s Eve of 2019, she needed those same stents expanded, but to get to those stents she needed two more stents placed. She did so well that we were able to take our yearly trip to visit family in Vermont in the very beginning of 2020, right before the COVID-19 pandemic began.
During that trip, we realized that we really wanted to be in Vermont. We would be closer to both of our families, Mira would be with her cousins and we would have access to some of the best hospitals in the country. The county in Florida that we were in had more people than the entire state of Vermont. We wanted to give Mira a small town feeling, with the freedom of nature to help build her courage and creativity. When the COVID-19 pandemic started, we also saw that Vermont had strict protocols and prioritized protecting people who were immunocompromised like Mira, which helped to ease our fears. We got the OK from her doctors that she would not need to be examined for another few months and made the move 1,300 miles half-way across the country to our new home. We found our pediatrician in our small town of Townshend, Vermont and she was very quick to set up appointments with specialists at the Children’s Hospital at Dartmouth Hitchcock Medical Center (CHaD).
CHaD has been such a convenience and relief for our family. Every one of Mira’s specialists is located there. We are able to book multiple appointments in a day and the schedulers are more than happy to assist in that process. Every one of her doctors has been more diligent and thorough with our daughter than we could imagine. All of the nurses are eager to help, return any inquiring phone calls at the earliest convenience and are quick to load up Mira with an arsenal of stickers and coloring pages. I’m pretty sure it’s safe to say that Mira’s excitement when she sees any of her nurses or doctors is reciprocated. Everyone will lovingly return her fist bumps, hugs and high fives without hesitation. Mira’s “Hi!” is a pretty familiar sound in the hallways.
When her cardiologist went on maternity leave, the interim cardiologist was just as helpful and in communication with her primary cardiologist to make sure everything was as it seemed. This past September, Mira had to undergo another stent expansion and repair an additional hole in her heart at Boston Children’s. Her CHaD cardiologist gave us every possible scenario and mapped out the steps to assure us everything was properly taken care of. After Mira’s surgery, her cardiologist and the nursing staff were quick to follow-up and keep an eye on her recovery.
More recently, Mira had to have her tubes replaced and adenoids removed. Her ENT and Cardiology teams were in communication to be sure her heart and body could handle the anesthesia. Mira was not shy one bit, holding hands with the anesthesiologists as she walked from prep to the OR and said “Hello,” waved and flashed her beautiful smile to every person whose path she crossed.
CHaD has really been a comforting beacon of light in a time of such uncertainty. Our family will always feel indebted to them for their knowledge, kindness and compassion. It is said that it takes a village to raise a child. Not only is CHaD our village but the doctors and nurses are definitely part of our extended family.
–Renee, Mira’s mom
MANY HEROES: ONE MISSION 