New Diagnosis – One Day At A Time, A Heart Mom’s Story

As we approach Heart Month PCHA begins its series on New Diagnosis. This week, Heart Mom Alexandra Frost shares with us the story of her daughter Emersynn’s  diagnosis in utero and how she learned to take the news and life with CHD day by day.

 

 

It all started when we went for our 12 week NT scan, where they measure the fluid behind the neck. The doctor came into the room and we could feel the discomfort. He said that our baby’s fluid behind the neck was measuring double the norm. This was a red flag for either Down syndrome or a congenital heart defect (CHD). He sent me to get blood work the same day. Ten long days later, I got the results that our baby tested negative for Down syndrome and the other genetic stuff they tested for, and we found out she was a girl! We were so excited and thought we were in the clear since we have no history of CHDs on either side of our family.

Fast forward 8 weeks when we went for our 20 week anatomy scan. When the doctor came in, we got that same feeling. She said, “All organs look good, except her heart. Unfortunately, she has a heart defect which puts you in that 1%.” It was one of the worst days of our lives. My world shattered as I tried to process these foreign words – “congenital heart defect.” They weren’t quite sure how severe her defect was at that point, which is why we were referred to a high risk OB and then a pediatric cardiologist.

When we saw the pediatric cardiologist, he broke the news that she does indeed have a complex heart defect which is VERY rare. Once again, my heart sank to the floor after hearing this news. Emersynn has congenitally corrected transposition of the great arteries (ccTGA or l-tga), a large ventricular septal defect (VSD), pulmonary stenosis (PS) and dextrocardia. Out of those one percent that end up with a heart defect, .5 – 1% end up with ccTGA. That is how rare the defect is! Only 5,000-10,000 people in the US have this condition! After leaving the cardiologist that day, my husband and I looked at each other in the car and looked back down at the paper that had a drawing of our baby’s heart. We were so confused and wondered if we would ever be able to understand the anatomy of our little one’s heart. Overwhelmed was an understatement.

 

 

 

 

 

 

 

 

 

We live in Fort Myers, and, unfortunately, the hospitals around here are not equipped to deliver babies with severe heart defects. We were given the choice to deliver in Miami or Tampa. Although Emersynn’s ped cardiologist (who is exceptional) is in Tampa, we decided to deliver in the Miami area at Memorial Regional Hospital (connected to Joe DiMaggio Children’s Hospital). This decision was made through countless hours of research after finding out (this is how I essentially coped with the news). During our research we came across a Facebook page for a boy that has the same defect. I reached out to his mother who led me to a private Facebook group for Emersynn’s particular defect. Only immediate family or the person affected is allowed to join this group. It turned out to be an extraordinary group that helped us tremendously! We found out, through this group, that a top surgeon for Emersynn’s defect was mentoring at Joe DiMaggio Children’s Hospital, and was there about once per month. This made us feel comfortable, as her defect is so rare and there are only a handful of surgeons that are successful in doing the major surgery that she will eventually need in the future.

 

We were told throughout the pregnancy that Emersynn would need a shunt within a week of birth, as they thought she wouldn’t get enough blood to her lungs. She would then need a major surgery called the double switch down the road. I ended up delivering on November 22, 2016 and she was a big baby, which defies odds already! They watched her closely in CICU for three days as her PDA closed. Once it was closed they monitored her saturation. She proved to be miraculous and was sent home on day 4, with no surgery and thriving!

Emersynn just turned one year old and has not had any surgery thus far! She is defying all odds and doing SO amazing! She is growing well and hitting all of her milestones on or before (!) she is supposed to! This little girl amazes us more and more everyday! She is such an inspiration to everyone around her and is such a strong little warrior! Emersynn will need a major open heart surgery in the next few years. The doctors say her body will tell us when it’s time. This is a very risky surgery and hard to put her through when she is currently doing so well. We know she will eventually need this surgery to continue to thrive and give her the best life. Some days, I hardly think about her heart defect, and other days it totally consumes me. It’s something I wouldn’t wish on anyone. However, we wouldn’t change Emersynn for the world. We know that we were chosen to be this sweet girl’s parents, because we could handle the challenge. Through this experience, we have learned to take it one day at a time!

 

 Alexandra Frost currently lives in Fort Myers, FL. She is originally from Long Island, NY and graduated from Villanova University in 2012. Alexandra has been married to her high school sweetheart for almost 2 years. She juggles real estate and being a mommy to a very adventurous one year old heart warrior. Alexandra and her husband are excited for their second baby on the way and know Emersynn is going to make a great big sister!

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