Fontan Series: Lily's Story
The Fontan: Our Story
Hi my name is Julia. Our daughter Lily is 7 years old and has Hypoplastic Left Heart Syndrome (HLHS) and a pacemaker. She has completed the three-staged surgical repair and is growing and doing very well! We are a CHOP family, and you may have seen Lily’s face on billboards and print material in the Philadelphia area.
I was asked by Sisters by Heart to share our Fontan story with the group. I am always happy to give support and guidance to families who are in the midst of that extremely long wait inter-stage. I remember feeling like we were in a “holding pattern” for quite some time!
When I was approached to share our experience, I made SBH aware that it would not be one of a lot of sleepless nights or feelings of being totally overwhelmed. I don’t want to minimize the impact of having a child with complex CHD on one’s physical and emotional health, but to me the Fontan was just the next step that had to take place for our daughter to move on with her life. You see, I refuse to let the terms CHD or HLHS define who Lily is as a child, or who she will become as an adult. Granted, we never asked to be given a sick baby, but that was the card we were dealt. Some people say that “everything happens for a reason.” I’m still not so sure how I feel about that statement, but I do know that sometimes things happen differently then we planned.
Sometime between the initial diagnosis, and Lily being born I made the decision that I was going to do everything in my power to give Lily a life that was as “normal” as possible, no matter what it took. We all have different ways of seeing what is best for our child, and I in no means try to push my feelings onto others. I completely understand the anxiety and feelings of depression that come along with having a sick baby. I feel blessed that we had a cardiologist who wasn’t overly conservative and always told us to let Lily live life and have new experiences even with an HLHS diagnosis.
In 2009 at 3.5 years of age Lily was admitted to CHOP for her Fontan. My husband and I decided not to tell her that we were going to the hospital until a few days before the surgery as to not worry her. In Lily’s case, she tends to be a worrier, and we felt that telling her too soon would cause much undue anxiety and stress. We were first case that day, and Dr. Spray performed the Fontan surgery which only took about one hour total to complete. Lily was taken to the CICU immediately after surgery, and we were able to meet with Dr. Spray who said the surgery went very smoothly with no unexpected complications. (Thank god!) Lily had an extracardiac Fontan with a fenestration.
After our meeting with Dr. Spray, we were able to return to the CICU to see Lily. Her chest tube was removed later that evening, and by the next morning the nurses had her sitting up and taking her first steps around the room. Lily was fortunate in that she did not develop the pleural effusions that can sometimes be associated with the Fontan repair. Lily had her surgery on Friday July 9th, and was discharged home on Monday morning July 12th after a 3 day stay. Here is a picture that was taken the day of her Fontan.
It has been almost 4 years since that date, and Lily has been doing so well. She is in the first grade at our local public school, and is very smart. She requires no special accommodations in the classroom or during school activities such as physical education class. We do have a Medical Plan set-up with her school that the nurse and all teachers are aware of and follow, and I keep in regular communication with the school administration and faculty. Lily is also very active and participates in many sports including softball, gymnastics, and dance. She loves arts and crafts, swimming, and riding the roller coaster at Sesame Place during the summer.
So I guess what you can all see is that Lily is a pretty cool kid! Do I always have in the back of my mind that she is a heart kid? “YES!” Do I wonder on a regular basis whether she will someday need a transplant? “YES!” Do I worry what her life will be like when she is 30 and whether she will be able to have her own children? “YES!” But will I let these fears and uncertainties hold us or Lily back?? The answer is “NO.” And the answer is no for one reason, and that is because I choose not to. We are only given one life, and I want my daughter to have a life that is filled with wonderful, positive memories. I want her to not define herself as a “heart kid”, but as a kid with amazing heart!!
Julia Rowbotham, Lily’s Mom
Thank you Julia, for sharing Lily's story and allowing us to share in her inspiring journey!