~Jessica's Story~

Some of you may already be familiar with Jessica through an essay shared in the book "The Heart of a Mother", for those that haven't read her story before then it will be shared again here.  Some years have since past since the book has been published and Jessica and her Mother Brenda are going to share with us their experiences since that time.

(Written by Deb Rennie Aunt to James HLHS)

"IN THE BEGINNING"

The call had come in at 3:30am on the maternity unit where I had under-gone a tube ligation earlier that morning after the birth of my second daughter Jessica. Ironically, It was this procedure that kept me in the hospital an extra day that may have contributed to saving my daughters life...One of the nurses on duty that afternoon discovered Jessica’s breathing had become shallow and she was showing signs of blueness.

I wasn’t aware that there had been some concern until after they had brought her into my room for her morning feeding. I was still a little tired from the tubeligation and Jessica seemed to only want to sleep. I tried to breast feed her and one of the nurses insisted that I keep trying as she was continually crying in the nursery and needed to be fed. After several attempts, we both fell asleep, Jessica’s head tucked under my chin. I awoke when the nurse entered the room to check on us and take Jessica back to the nursery. Later that afternoon I could hear my doctors voice in the hallway almost whispering. I waited patiently for him to arrive into my room with high hopes of being released sometime that day.

Dr. Lehman entered my room and almost immediately I could read the concern on his face. “Well Brenda, you are doing fine”. After a brief hesitation he continued, “but our little baby has me somewhat concerned. We have detected a little gallop in the heart beat that may or may not be a murmur. I have ordered up some test and as soon as I know more I will let you know”.

The little frown Dr. Lehman gets when he is concerned never left his brow. I had seen that look before and I knew this must be serious. It is very hard for me to explain just what I was feeling at that moment, but I recall the feeling of emptiness mixed with confusion and shock. I can tell you it is not a feeling I ever want to experience again. I could hear Dr. Lehman talking on the phone and finally was able to gather from the conversation that he was discussing Jessica’s case with a cardiologist from Loma Linda...and then finally, UCLA Medical Center in Los Angeles.

It wasn’t long before a team of doctors from UCLA was brought in to transport my baby daughter to their medical center where her needs and an evaluation could be best accomplished. We waited for the results that would change our lives forever, and place us in a situation where we had to decide the fate of our daughters life.......a decision no parent should ever have to face.

“Mrs. Vignaroli” I heard a kind voice on the other end of the phone. “This is doctor Santulli. I am calling to let you know about the situation with your daughter....it seems she has a very complicated problem with her heart. The name of this congenital heart condition is known as Hypo-plastic Left Heart Syndrome......do you remember Baby Faye”?

I knew in an instant who he was talking about as I had found her story so fascinating..... “Yes...the baboon to baby heart transplant”? I said.

“Yes, Mrs. Vignaroli...and I must tell you that her situation is one that has a very high mortality rate....zero percent if you do nothing and just let you take her home...I must tell you a lot of parents have chosen this route”.

“What is my other option”?   Immediately I wanted to dismiss the option of doing nothing....I wanted my child to live. I wanted them to do everything possible even if it meant another experimental baboon procedure.....just help her to live.

It was decided that my daughter would have a Norwood procedure, the first in a three step procedure to help in the reconstruction of her heart and vessels...it would be a wait and see procedure in that it was a very experimental procedure with children born with HPLH during this time had only a 1% survival rate based on the fact that only one other little baby, 6 months older than Jessica, had survived this procedure with HPLH at UCLA.  The anxiety was unbearable. I learned very quickly how delicate this situation had become and that there was the possibility that my daughter may not make it through. Jessica was wheeled past my doorway. The team of doctors followed close behind towards a waiting ambulance. I remember leaning up against the wall and saying in a whisper towards Jessica, “I love you baby......I love you.....” I just wanted to hold her one more time.  But time was precious.

We had to leave as soon as the doctor released me from the hospital that  morning to make the hour long drive down to UCLA so that we could be there in time to see our baby before they took her into surgery at 11:00am.....time was important and the team of doctors were so gracious and understanding towards two parents who were about to view their baby for the “first” time in the ICU.....I was not expecting nor prepared to see my daughter in such a swollen state and tubes were everywhere....her beautiful black curly hair had been shaven off on one side where an I.V. was sticking out of her head. She seemed to be struggling but the morphine had begun to settle in and her eyes were dilated.

“She is a very sick little girl” someone said to me. “We need to get her into surgery right away...so if you don’t mind...you can say good-bye to her now and you will be able to spend more time with her later”.

We kissed her on the forehead and held her tiny little fingers in our hands as they began to roll her down the long hall towards surgery... “Be strong Jessica...mommy and daddy love you so much”.  At the time, those words just didn’t seem like enough..and the empty feeling I had in the pit of my stomach began to fill with worry and the heartbreak begin to physically set in.

Waiting for your child to come out of surgery is a feeling that is so gruelling and emotionally draining....I would imagine that even the strongest mind  would be tested....in our case the first surgery was close to 8 hours.....a lifetime. We couldn’t pull ourselves away from the waiting room because we were afraid someone would come looking for us. I felt as if I was on an emotional roller coaster and the engineer had walked off from the switches. I was beginning to have some pain from the tube ligation. I had found out on a revisit to Dr. Lehman that he had also performed an appendectomy on me while he “had me open”. But for some reason....my physical pain was so overcome by my emotional pain that my body had begun to feel numb. Somehow this helped me get through it. I truly feel that God was giving me the peace within to compensate for the pain I was feeling.

In the days that would follow...our emotions were running high...Jessica had survived the surgery and our darkest hours finally had started to brighten and soon joy had filled our hearts again....our Jessica was alive! I couldn’t wait to bring her home so that my three year old daughter, Cara, could finally see the baby sister she had been waiting for. We had to make several trips between the hospital and home so that Cara could be assured that we were O.K. and so was her little sister.

In the weeks that followed, her stay in the hospital was filled with test after test, x-ray after x-ray, and a lot of praying. She had suffered what was thought to be a seizure following surgery so the concern shifted to the possibility of brain damage...this would have to be watched closely and therefore a neurologist was assigned to run a series of test just in case what had occurred after surgery was indeed a seizure. The doctors explained to us that sometimes babies just twitch after birth and it was really hard to say if Jessica was experiencing this, so to be on the safe side she was placed on Phenobarbital....even though she didn’t show anymore signs of seizures. This continued for the following year along with several EEG’s and finally it was determined that she may have indeed suffered some minor brain damage to the center of her brain which may or may not effect her motor-skills as she gets older.

Every step was a major event...and four weeks later our baby was finally coming home. I remember telling my husband.... “Everything around me seems so trivial....the problems and complaints I may have had before just seem so small...the only thing that matters to me is having our family together and cherishing every moment. Life is so important”. What I didn’t realize was that my life had taken a very significant turn...and I would be forever changed.

My family was the only things that mattered to me...God had blessed me with two beautiful little girls and a husband who worked hard to keep things together. The months were very busy with visits to the doctors. Trying to keep up with the medication schedules as Jessica was on eight different medications at one point and to complicate things she had forgotten her instinct to suck right after birth, so she was fed through a tube inserted through her nose and ran down into her stomach. This procedure was known as the Gavage method used in the hospitals for patients who are too weak to feed themselves. I had to learn this procedure while Jessica was in the hospital before they would release her to come home. All of this and a demanding little three year old kept my days busy, my priorities straight, and my faith in God strong. Someone along the way had once told me “God never gives you more than you can handle”. This saying stuck with me and really helped me to get through some of the tougher days.

When Jessica turned two, we had noticed that her breathing was becoming more difficult .Her tiny body was not strong enough  for her to make any attempts to walk, therefore she got around by scooting. She was beginning to show signs of blueness around her mouth and fingers so her second surgery was scheduled and she then received the Glenn Shunt. This procedure proved to be very beneficial in her strength and growth. Almost immediately she mastered her walking skills, her breathing was back to normal for her condition and she was beginning to blossom. This should have been one of the happier times even though we knew another surgery would be required later. However, my husband was beginning to show signs of stress and our communication was waning....some nights he would come home and unwind with a glass or two of bourbon...over time this amount had increased to a bottle a night....and this continued for several months. The months turned into years and once again I found myself facing a dilemma that I wasn’t quite sure how to handle....I knew his drinking was becoming more of a problem and looking back now, I know I was in just as much denial for his problem.......and now our world was beginning to crumble. His drinking became so intense and his behavior became abusive towards me. It wasn’t long before he quit his job he had held with the District Attorneys office for 10 years forcing me to take a job that paid half of what he was making just so we wouldn’t lose our medical benefits. I was worried about how we were  going to pay for Jessica’s next surgery.  I was away from my daughters during the days work and it was tearing me apart. My husband was not handling things as easily as I had thought. I had read earlier where some parents just cannot handle the stress of having a child born with severe medical problems. I had no idea it would hit so close to home.

The abuse had taken a violent turn and I knew I had to remove my children from this situation. My concern revolved around Jessica and her needs....she had been through two open-heart surgeries by now and would soon require the third stage. There were decisions to be made and from here on ....we were on our own.

My parents have been our biggest support since my divorce in 1991. I honestly don’t know how I would have handled everything without them. It’s tough being a single parent and when you have a child with special needs....the emotional support is what gets you through. I continued to work and my mother watched my children. I knew Jessica was getting the love and care she needed from my mother as well as my father. They needed stability during this time so we moved into their home. Cara was having some emotional problems from the divorce and I’m positive that this move helped her tremendously.

My divorce became final in June of 1991 and Jessica’s last surgery was performed in the same month. By this time Jessica’s father had fled the state of California leaving behind all of his responsibilities and sadly enough his two daughters who have not seen nor heard from him since. I know in their hearts they are hurting by the fact that their father chose to stay out of their lives forever...and of the two, Jessica is the one who still ask about him every now and then, and my heart aches for her.

At the tender age of 16, Jessica has given me so much. She has endured more than most adults could in a life time. Strength, courage, undying love for life...these are the things that she has taught me. She is so sensitive to other people’s feelings. Getting to know some of the parents of children with congenital heart disease, this wonderful gift seems to run hand in hand.

Jessica was 5 years old when she underwent the third and hopefully final surgery, known as the Fontan Procedure. She has continued to grow on a slow scale for her age. It was decided at this point that she would need a pacemaker as a safety net, and personally I’m glad it’s there. It eases my mind and Jessica thinks it’s pretty neat too. She has continued to thrive and loves her high school years.  It amazes me how other children become so protective of each other when they know that one of their classmates has a medical condition. Her teachers have been wonderful all during her school years in explaining the situation to the other students and they have responded in such a loving way. This is another hurdle that weighs heavy on the mind of a parent with a child who requires a little special attention. I am so grateful to her friends and teachers.

Now that she is 16, her body is physically the size of an 11 or 12 year old, so petite and fragile. At times she loves to gather us all up in front of the TV and ponder the day. It’s usually at times like this that her sense of humor overwhelms me.

Jessica loves music. She carries around with her a little walk-man radio and listens through her headphones....at times she stares into space and I catch myself studying her eyes. I wonder what she is thinking about. She catches me looking at her and gives me a big toothy smile and my heart just melts.

There have been times, in our serious moments, that she has asked about her father. She doesn’t remember how he looks since she was only five when he left the state. So we will take down the family photo album and she stares at the pictures, sometimes with a little sadness. I assure her that her dad loves her and Cara even though we haven’t heard from him in over 11 years. I think it is important for her to believe this....and hopefully in time she will come to terms with the fact that some people just don’t deal with life as easily as others.

This may be something she never understands given the fact that she has fought so hard to live and she gives it all she’s got....because she loves life with such a passion.....she is a survivor.... and everyday to her is a blessing just as it is for me.

I know that God has given us these angels and blessed us in a way that no other parent could possibly imagine........we are truly blessed........