My family’s understanding of the great need for research into the prevention of congenital heart disease began even before my daughter Ava was born. Ava was diagnosed in utero with complex congenital heart disease (double outlet right ventricle, single atrium, single ventricle, interrupted aortic arch). Like most parents of children with congenital heart disease, we were told that the cause of our child’s heart disease was a complete mystery to modern science. We learned that although prevention of this type of congenital heart disease is not yet possible, treatment is.
At the beginning of my third trimester, we were told that after my daughter was born, she would require a series of three open-heart surgeries to live. This early diagnosis did not change our birthing plans, but it was essential information for us to know so that we could ensure that Ava would receive the proper immediate care and survive until surgery. This was just the first in a long series of fortunate (or, perhaps I should say, unfortunate) events.
Ava was born by Caesarean section at 37 weeks gestation, owing to a low heart rate. She weighed 4 pounds, 15 ounces and was transported that very day to a separate hospital and diagnosed with other congenital anomalies that would also require surgical intervention. Her first surgery was over before I was discharged from the maternity ward. We were finally able to hold our daughter for the very first time when she was one month old.
After enduring an aspiration, another open heart surgery, a cardiac arrest followed by CPR, and other complications, Ava finally came home at seven months. She could not sit or lay on her tummy yet and had the head control of a newborn baby. Ava was fortunately, or unfortunately, discharged to us with continuous oxygen and continuous feeding by a tube that delivered formula into her tummy through her abdominal wall.
Later we learned that Ava had sustained permanent damage to her hearing during the final months of this hospitalization. Ava’s speaking and comprehension is still quite delayed today. We do know that her hearing is fully corrected with hearing aides, and she is thankfully making steady progress in her speech therapy.
Throughout our entire experience, we have felt very grateful for the effectiveness of all of Ava’s treatments and her medical equipment. At the same time we are fully cognizant of the losses and hardships that have been involved with each.
Recently, Ava underwent the third of her three staged heart surgeries. Due to a battle with fluid in the lung cavity, she spent two months in the hospital afterwards. While there celebrating her third birthday, we realized a quarter of her little life had been spent in the hospital. She has been a very resilient little girl through all of this.
Today, we are especially grateful that Ava no longer needs to be on oxygen. She can walk freely and even spin without getting stuck and tangled in her hosing. We can see her face unobstructed for the first time.
Our ordeal with congenital heart disease is, fortunately or unfortunately, not over. Watching my child’s and many, many, other’s suffering has demonstrated to me, with ultimate clarity, the need to find a way to PREVENT congenital heart disease. This ordeal has brought us a deep appreciation for so many things, including the life and the health that she does enjoy. My daughter, Ava, is a beautiful little doll full of smiles, laughs, songs, hugs and kisses. She is my greatest pride and pleasure.This I know, my child is a gift. Congenital heart disease is not.
Jennifer LaVere, Ava’s mom
Sadly, after the story was written, CHF was informed
Shortly after Ava’s fifth birthday she was admitted to the hospital again and we were told that death due to complications of her heart disease was imminent without a heart transplant. On March 1, 2010, Ava received a new heart during a 14-hour surgery. Immediately afterwards, she struggled with severely low blood pressure which, it turns out, did serious damage to her organs. As she started to stabilize over the course of several weeks a new complication arose, kidney failure. She also was fighting a losing a battle with infection.
On Wednesday, June 16, 2010, Ava Lillian LaVere died peacefully at Children’s Memorial Hospital. As she slipped in and out of consciousness in her final days, she would lock her eyes to mine and squeeze my hand as hard as she could, making it clear to me she wanted to stay. A parent never imagines losing their child or having to say goodbye to their child. We will always cherish the time we had getting to know our incredible, joyful, affectionate, spirited daughter, Ava. Today, and with your help, we are honoring the gift of her life through Ava's Giving Tree. With your contribution, it is my hope that this will create a foundation of knowledge which leads to the discovery of ways to prevent congenital heart disease.