New Diagnosis – Jaclyn’s Story

This week, PCHA-OH Board Member, Jaclyn Frea shares the story of her miracle baby’s diagnosis with Tetralogy of Fallot.


My husband Bryan and I were married on March 5, 2011 and we knew that immediately we wanted to start a family. Little did we know, getting pregnant would be a lot more difficult than we thought and tragedy would strike two fold. Five months after we were married, I lost my Dad to cancer and, a year and a half later, in 2014, I lost my Mom to a different form of cancer. I am an only child, so losing both my parent was a devastating loss, but we didn’t want to give up at trying to have the family we had always wanted.

Along with the loss of my parents, Bryan and I tried and tried to get pregnant with no luck, each month we thought, maybe this month will be our month, then nothing. We then decided to go through a fertility doctor, only to find out that pregnancy probably wasn’t in our future. At that time, there was no explanation why! We wanted so badly to be parents. We decided to look into the adoption process and were approved; the only thing we needed to complete the adoption process was to find a birth Mom. After 5 years of unsuccessfully trying to get pregnant and just being approved to adopt, I found out I was pregnant!!!

My pregnancy with Paul was amazing. Yes, I had morning sickness, a lot of morning sickness, but I was carrying the baby I had always wanted. I was pregnant with a miracle baby, and I was incredibly grateful and I loved every single minute of being pregnant with this child! From hearing the first heartbeat, to seeing our baby in the ultrasounds and seeing my belly grow, feeling the baby kick and being incredibly active, and then finding out that we were going to have a little boy. God had answered my prayers!

The day arrived when Paul wanted to make his debut and everything seemed to be going pretty smoothly, until, his 36 hour check up. I remember the nurse coming in and telling Bryan and I that she was going to take Paul to the nursery to complete his check up and feeling so blissful about everything being absolutely perfect. A little while later, the doctor came into tell us that they could still hear a murmur in Paul’s heart, and they wanted to send him down to the NICU to conduct an echocardiogram on his heart just to make sure everything was alright. I hadn’t been released from the hospital yet, so we were going between floors being with our son and waiting on me to be discharged.

Bryan and I walked into the NICU, and I remember being greeted at the entrance with our nurse immediately informing us that they were going to be conducting an arterial blood draw on Paul. I remember that my heart sank. I knew in my gut that something was wrong with my baby boy, and the next hour we were waiting on the NICU doctor to come and tell us that our son was born with a Congenital Heart Defect, Tetralogy of Fallot!

How could this be happening, after everything we had been through, a CHD???? Neither Bryan, nor I were prepared, let alone even thought about a CHD! I remember sitting in the chair, sobbing, and the only words I remember hearing were Tetralogy of Fallot, open heart surgery necessary; if he didn’t have the surgery, he wouldn’t survive to be a teenager…..what???!!!

My husband is a Firefighter and Paramedic, and I thank God that he was there because he was so strong and he understood everything the doctor was saying. Paul was considered a pink tet baby, as his O2 saturation remained near 100. Looking at him, one wouldn’t even know that he was sick. In a normal case of Tetralogy of Fallot, the heart shunts blood from the right side to the left side, sending oxygen poor blood to the body. Paul instead shunted blood from the left to right, keeping his oxygen levels very high, but causing constriction of the pulmonary blood vessels and risking permanent lung damage due to this increased blood flow.

Paul was released from the NICU later that day, and that is when the litany of doctor’s appointments and preparations began. Bryan and I kept Paul quarantined pretty much until his surgery, because we wanted to try and keep him as healthy as possible. When he was 4 1/2 months old, he had his complete repair via open heart surgery in 2016 by Dr. Toshiharu Shinoka. Paul is followed closely by Nationwide Children’s Hospital, but now only requires yearly echocardiograms and check ups.

Paul is now 22 months old and he is doing phenomenally well; exceeding every milestone set before him.  Paul is a happy, mellow baby (toddler), who loves the water and can’t get enough of the bathtub and the swimming pool. He is always smiling, beginning to talk, and using lots of sign language (we began to teach Paul sign language when he was 6 months old).  He LOVES music, dancing and trying all kinds of foods.  He is very compassionate with a strong love for animals (he loves to give kisses and hugs where ever he goes). He is an only child, a total flirt
(who no doubt will use his scar to flirt with the ladies in the future).  Paul is a dynamic young man, who is also a giant book worm (he gets to go through about 25 to 30 books each day), walking and running everywhere, is super chatty, and is climbing on and into everything.

All who hear about him are inspired by his story and genuine passion for life.  Paul is, without a doubt, our miracle baby. I had to have an emergent hysterectomy 6 months after Paul was born, only to find out that I had severe endometriosis. The doctors said there is no scientific or medical reason why I should have ever gotten pregnant. Paul is a miracle, and is meant for great things in his very bright future!

Jaclyn Frea  is a wife, to Bryan, and a Mom, to Paul her heart warrior. She loves her family, animals and OSU Buckeye Football. She is a PCHA – Ohio Board member, as well as the Communications Coordinator for Congenital Heart Network of Central Ohio.  Jaclyn also volunteers as a wish grantor for the Make-A-Wish Foundation.  In her spare time, she loves to spend time at the zoo, with her family, coloring, and Jaclyn loves makeup and all things beauty related.

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