Our journey as a heart family began just over three years ago at a routine 20 week scan. We arrived at the scan that morning as excited parents-to-be, looking forward to seeing our precious baby on the screen. We left the hospital with our world falling apart around us. Being told that our child had a severe heart defect was one of the most devastating moments of our lives. We were scared, uncertain of the future and clung to each other and our friends and family who helped pray for and support us through this time.
Jessica was diagnosed with hypoplastic left heart syndrome, mitral atresia, aortic coarctation and a ventricular septal defect. She also had a restrictive atrial septum and we were told that her prognosis was bleak. We were very lucky to be offered fetal surgery to help enlarge the hole in her atrial septum at 28 weeks gestation to help improve the odds of her surviving. She had her first open-heart surgery (the first stage of the hybrid procedure) at eight hours old, the second part of the hybrid procedure at eight days, her Norwood at 14 weeks and her Glenn at seven months old. You can read more details about our journey here.
Jessica is now almost three and is a little bundle of joy and happiness who lives life to the full. We are incredibly blessed to have her in our lives and her heart-healthy baby sister Sophie who is eight months old.
Throughout our journey as a family, we have met many other heart families, from the families we got to know on the cardiac ward during our times there to the families we have got to know through their sharing of their own journeys online. Some of these families we have been fortunate to meet in person; others we have never met but all have helped us in some small way by sharing some of their experiences and we hope that by sharing our experiences we can also help others in return.
Heart to heart is a monthly link-up for heart family bloggers. Whether you’re a heart warrior, a heart parent or a friend or relative of a child with a congenital or acquired heart defect, I would love for you to share your experiences of your journey with me. It can be an update on how your heart child is progressing, it can be sharing advice for other heart families, a reflection or even poetry, an old post or a new one – just as long as it is about an aspect of life as a heart family.
Please use the code in my sidebar to link back here and don’t forget to read and comment on other posts. Looking forward to sharing our stories together.