By Carol Raimondi
For many, the decision to become a mother is huge step in life. When you are born with complex congenital heart defects, that decision becomes much more complicated and involves significant planning to ensure you and your baby will survive. Even with the best care, the risks are present and never far from your mind.
When my husband and I decided we wanted a family, we knew it would not be easy. In 1998, I had already undergone 3 open heart surgeries, numerous pacemaker operations and had several small strokes. With my cardiologists approval, I was able to go forward with our dream. After initially struggling with fertility issues, I became pregnant just before New Years Eve. Immediately, things changed. Medications I once took had to be stopped, or changed. Part of this was giving myself a shot 3 times a day. With each injection, I focused on the goal, becoming a mother.
My sister in law was also pregnant at the time with her first child, due just 6 weeks before me. Our pregnancies were as opposite as can be. Sure, I had all the “normal” symptoms, like morning sickness,cravings and feeling that amazing flutter for the first time, but that was where the similarities ended. I also dealt with small strokes at 6 and 24 weeks along. I dealt with my pacemaker lead malfunctioning due to my growing belly, which required using much higher energy to keep my heart beating fast enough. I had a hematoma in my uterus that threatened both of our lives and put me on bedrest for a total of 14 weeks. I saw doctors on a weekly basis. At 30 weeks, the hematoma, (which would later be described as the size of a football) caused my water to break. Despite the medical team wanting to try and postpone delivery as long as possible, 4 days later, my heart and my childs both proved that it was time for us to meet. Interestingly, the preference was for me to go through labor, which prepares the heart for the large shift of fluid that takes place after delivery. Historically, my body rarely does things as expected, and this was no exception. Nearly 13 hours after inducing labor, I had made very little progress, so the decision was made to go ahead with a cesarean section.
Shortly after 10am, on July 2nd, Isabella Christine made her first appearance into the world. At 10 weeks premature, weighing exactly 3lbs, she was perfectly healthy in every way. My cardiologist checked to be sure her heart had taken after her father, which we were blessed it had. Due to her size, she remained in the hospital for nearly a month, as she required tube feedings. I did not have any issues from the delivery, but was still monitored for several days before going home. Those days were filled with so many emotions. Again, not having the “normal”, where you were able bring your baby home with you. Nothing in my life had been typical up to then, so I just accepted that as I do with everything else I face, it as MY normal.
Isabella is truly my greatest miracle. There were so many times when my husband and I wondered if we would be able to have our own child. There were people who told me I was dumb to risk carrying a child. Less than a year and a half after having Bella, I became pregnant very unexpectedly. Sadly, at 12 weeks, I had a miscarriage. Reflecting on that, my health was already struggling early in the pregnancy. We had not gone through the meticulous planning as we had the first time. I can only wonder if my health would have continued to deteriorate had my pregnancy continued.
The bond that Isabella and I share is deep. Even though she is healthy, I feel she shares a unique perspective with me. Unlike my parents and husband, who had a “normal” life, free of the congenital heart defect world and all that comes with it, until I came into their lives, her and I have only known that world since day 1. From as early as she can remember, she was visiting me in the hospital. She was 7 when I had my 4th open heart surgery. She is used to me needing to rest and take medicine. She can sense when I don’t feel well before I even say anything. Do I wish she didn’t need to live with a chronically ill parent and the worry and fears that go along with it? Absolutely not. This is her normal though. It has shaped the young woman she has become. She is compassionate and kind, and has learned a lot about perseverance and adversity. Is it possible she would have been that person regardless of my health? Of course. Either way, I am as proud as ever of the person she is, and can not look at her without realizing what a blessing and true miracle she is.
Below are the bios of each amazing mom that participated in this project.
Jen is a mom to two angels and one rainbow baby. She loves spending time with her daughter, husband and two dogs. Volunteering has become a great passion for her since losing her first two children. To her it is a way to keep them with her.
Tori Smith is a mom and an advocate. She believes everyone has a story and when we share those stories, we begin to heal and become stronger.
Carol Raimondi is an adult CHD patient, a mom and a former nurse, living with Congenitally Corrected Transposition of the Great Arteries. She currently is the President of Pediatric Congenital Heart Association of IL(PCHA-IL).
Susan Swanson DeBouver
Susan is a mom, grandmother, and busy owner of Pilates Plus of Schaumburg. She is a self-professed, spirit junkie and combines her fitness/anatomy education with her spiritual education.
Michelle Williams is the mother of three children: Sadie, Sawyer and Landon. After Sawyer's death in 2010 she formed Sawyer's Heart Project - a non-profit organization that supports bereaved families in the Chicagoland area.
Sarah has a passion for the non-profit sector, working with volunteers, writing, and educating. She holds a Doctor of Education in Educational Leadership and works in non-profit management.
In 2016, she partnered with two colleagues to form a non-profit, where she serves as the President and CEO of the organization, which helps families experiencing medical conditions.
She and her husband have two sons and enjoy spending time together outside doing many activities like riding horses, running, fishing, and gardening.