Tarynn, born 2009In May of 2008, my husband and I were thrilled to learn that I was pregnant with our third child. Our second child, Aoife, has Truncus Arteriosus, and although my husband and I knew that there was a possibility of having another child with a CHD, we were expecting that all would go well and were looking forward to having a healthy baby. As a result of this, we were scheduled for a level II ultrasound and fetal echocardiogram. We weren't especially worried so you can just imagine the shock and devastation we felt when the doctor told us that our unborn child did in fact also have Truncus Arteriosus.
The news sent us reeling and we felt like our world was ending. Although Aoife has done well, the thought of having to face the stress of multiple open heart surgeries for another child was numbing. How could we have the strength to go through all of this again? I also felt robbed of the one thing I was desperately looking forward to - the chance to fully enjoy a new baby without the stress of a heart defect. Amidst many tears, I started reaching out to everyone I knew to ask for prayers for our unborn child. I truly believe that it is only through these prayers and support of family and friends that my husband and I survived the months leading up to our baby's birth.
Immediately after receiving the initial diagnosis of our unborn baby's heart defect, my husband and I made appointments with a pediatric cardiologist in RI and the Advanced Fetal Care Center at Boston Children's Hospital. Although we were distressed, we wanted to plan and do everything in our power to get her the best possible care. We made plans to deliver our baby at Brigham & Women's Hospital so she could immediately be transferred to Boston Children's after birth. We were much more knowledgeable about heart defects than we were when Aoife was diagnosed one week after birth, and we wanted to be sure to be the best possible advocates for our new baby girl. Although we were reeling from the awareness that we would have two children with CHDs, we also realized how fortunate we were to be able to prepare for her arrival so that she could have the best possible care.
Tarynn Marielle was born on February 5th, 2009. She had open heart surgery when she was four days old and came through with flying colors! The surgery consisted of patching a large hole in her heart, separating the aorta from the branch pulmonary arteries, and putting in an artificial conduit to connect to the right ventricle. Tarynn has continued to do well, but her branch pulmonary arteries are small and her artificial conduit is already quite obstructed. Tarynn had cardiac catheterizations in August 2009 and April 2010 during which the doctors placed two stents to open up her small blood vessels. Her next open heart surgery to replace her conduit will likely take place during th summer of 2011, although it is possible that it may be a bit sooner or even a little later.
In spite of all she has been through, Tarynn is an easy going and pleasant baby. She is on track cognitively, and is making progress on her gross motor skills with the help of early intervention services. My husband and I love Tarynn dearly and her sisters adore her. Tarynn smiles and babbles all day long and has brought us so much joy. Although it is difficult to think about our precious baby girl needing more surgeries, we are hopeful that things will continue to go well for Tarynn. She is a blessing to us and we are so thankful for each day we have with our smiley little girl.
Story written by Tarynn's mom, Heidi - Rhode Island
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