Janaya's Story: Parent's Letter Project Undergoing a Norwood procedure- Janaya's mom

On November 30, 2008, my daughter, Janaya, was born at 32 weeks gestation with complex congenital heart disease including unbalanced AV canal, hypoplastic left ventricle, and coarctation of the aorta. My husband and I were aware of her heart condition, but we were not prepared for what would come. Janaya was transported to Children's National on December 2, 2008, to undergo her first open-heart surgery, with two more to follow in the near future. My husband and I were stunned beyond belief. We tried to come to terms with everything.

We live in Baltimore, MD, so for us it was extremely hard. We literally had to spend a year going back and forth from Baltimore to Washington, DC. We felt helpless at times, but we continued to pray for healing for our little girl. Six months later, Janaya had the second part of her surgery. This time around, the doctors had a hard time getting her off the vent, which caused her lungs to collapse. My husband and I were terrified for our daughter.

Throughout all of this, Janaya was never able to take a bottle. We later found out that she had an obstruction and therefore, she underwent another procedure. It was always something else. I became very frustrated, only to learn that all these procedures were needed to help Janaya. When you have a special needs child, it's very hard on the family.

The one thing that helps is to talk about what you are feeling, cry if you need to, always be involved in your child's care, and ask questions if you don't understand. There are resources out there for you, so please use them to help you cope with your life-changing experience.

Today, July 2, 2010, Janaya is currently at a hospital in Maryland awaiting a discharge date. Janaya currently has a tracheostomy tube, and a Gastrojejunal (GJ) tube. Janaya still needs to have the final part of her surgery. That surgery will depend on her growth, and whether or not her lungs improve before that can happen. My husband and I are looking forward to her homecoming. Janaya has never been home. It's been a very long road, but we are thankful for the time we have with her. My final words to you are to cherish every moment you have with your son/daughter because you can never get them back. Stay positive and always pray for strength. God bless all who have been through the same thing. I hope my story helps others. Janaya is doing well.

Sincerely,

Janaya's mom, Angela

Treatment Team

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