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Rebecca's Life with Heart Disease
by her parents

Rebecca was born with two serious heart defects, tetrology of Fallot (TOF) and pulmonary atresia. TOF consists of four separate abnormalities: a ventricular septal defect (hole in the middle of the heart), pulmonary stenosis (a narrowing of the blood vessel going to the lungs from the heart), hypertrophy of the right ventricle (a thickening of the walls of the right side of the heart) and an overriding aorta (the big blood vessel that's supposed to bring blood filled with oxygen to the rest of the body is bringing blood from both sides of the heart, some with oxygen and some without). Pulmonary atresia is the failure of development of the pulmonary artery and valve (that is the same blood vessel already mentioned that's supposed to bring blood from the heart to the lungs where it picks up oxygen).  

When Becca was one month old, after she had already had one operation, she was placed in our family for adoption. At that time the doctors gave her only a thirteen percent chance of living to the age of five.  They told us there was a possibility of her having an operation when she was three years old that might save her life.  So with hope, this special child became part of our family, and part of our heart and soul. 

When she was three months old, her condition deteriorated dramatically almost over night. After a diagnostic procedure called a heart cath, the doctors told us that things had changed in her heart.  There was nothing they could do except to make her comfortable; Becca only had a few months to live.  Devastated, we took Becca home, determined to surround her with joy, even though our hearts were breaking.

When she was a year old, they performed another heart cath.  I'll never forget the huge smile on the doctor's face when she walked into the waiting room and told us,  there was no way they could explain how or why, but things had changed in her heart again. Because of the changes, there was something they could do.  Becca was going to live!  She was going to grow up! 

A fairly simple heart surgery was done when Becca was thirteen months old.  Everything went well until they tried to take her off the heart/lung machine.  She would not come off.

There was one slim possibility, a "heroic measure," the doctors called it that might save her life.  They put her on ECMO, (a portable heart/lung machine) and took her into Intensive Care. Becca needed 97 units of blood and blood products in 6 days.  We waited, watched, prayed and told her of our Love. Our miracle Rebecca surprised everyone again.  She was off ECMO in four days and out of the hospital in a month.

We learned to live on love and hope...

Unfortunately the operation had not accomplished all of what they had wanted, so she was back in the hospital a month later to stretch/balloon, her pulmonary arteries.

Another heart cath was done four months later.

The operation to “fully repair” her heart was scheduled for September at UCLA with a surgeon who is known world wide for accepting and successfully operating on difficult cases.  We flew to California, but the surgery was canceled the night before when she caught a cold. 

Surgery was canceled again a month later because of a cough.  A week before the third time we scheduled surgery the doctor called to tell us he felt Rebecca was "too high risk". He would not operate on her.  Tears flowed and our hearts ached.  This was the beginning of November and we had been told that Becca would need the full repair by the end of January, or the only thing that could be done to save her life would be a heart/lung transplant. 

Another heart cath and ballooning procedure was done to stretch her pulmonary arteries.  Critical numbers that looked better were taken and all the information was sent again to UCLA, hoping the surgeon would change his mind.  A week before Christmas he called.  He said she would be a high risk, and they would expect a rocky recovery period, but they would operate!   Surgery was performed January 12.  After seven long hours, Rebecca easily came off the heart/lung machine.  She had no major complications and was out of the hospital in a week.

We were home in ten days.

For 2 ½ years after UCLA, Becca did not spend one day in the hospital.  Together we celebrated life! 

When Becca had her 7th heart cath, the results were not good.  The pressures in her pulmonary arteries were too high  (secondary pulmonary hypertension) and slowly getting higher.  They ballooned several areas and expressed great concern.  The pressures in her lungs needed to come down or someday she would need a heart/lung transplant.  Stenting and more ballooning were recommended.  Last October after Becca turned 5 she had another catherization.  This one lasted 8 long hours.  We were updated often.  Becca was doing very well.  The doctor ballooned everything he could find to balloon and placed two stents in her pulmonary arteries.  At 6:30 we were told they were just about done and Becca continued to do well.  At 6:40 the doctors returned to tell us there was bleeding in her lungs.  They believed one of the stents had punctured a pulmonary artery.  If this had indeed happened they would try to stop the bleeding but that had never been done successfully before.  If the bleeding could not be stopped Becca would die. 

We were overwhelmed with love, fear, prayers, and tears for our Becca.  An hour went by and the bleeding was slowing down.  Good news!!  The pulmonary artery was not torn.  Probably some bronchial collateral’s had ruptured.  Becca was still in critical condition but there was reason to have much hope.

Our precious Becca was in ICU for 5 days.  Filled with gratitude to God and the doctors we brought Becca home weak, tired and on oxygen.

In the next 4 months Becca, gained back all her strength.  As always she loves being active, especially going to preschool, riding bikes and jumping on the trampoline.  She must take her regular heart medicine twice a day, and at night when she goes to bed, she needs oxygen.

During Becca's last heart catheterization, we couldn't sleep and wrote this journal entry instead:

It is 3:30 in the morning. Becca’s cath lasted only 3 hours and she was able to come home last night.  Very simply put, nothing that has been done has enabled her very deformed pulmonary arteries to grow.  Even the stents and massive balloonings done last October did not lower her high pressures.  The pediatric cardiologists felt that there were only 2 places left to try to do something and the risks to Becca greatly outweighed the benefits.  Her only option for a future will be a heart/lung transplant.  We have been told that at this time the success rate for children with heart/lung transplants is extremely poor.  “ The Heart of a Child” is really the Heart of a Family and right now our hearts are breaking.

On the way home from the hospital yesterday Becca told us how lucky she thought she was.  When we asked her why, she said it was because she got to go home and there were so many children who had to stay in the hospital.  We too feel blessed to have brought her home, from the second she was placed in our arms when she was 1 month old.  We will always believe we are the luckiest, most blessed people in the world to have this most precious treasure in our lives.

Becca loves to dance.  It is our hope that today she will feel like dancing.  When she dances our hearts dance too and maybe that will help dry our tears and enable us to start celebrating every day the way it should be celebrated, with faith, love, hope, joy and courage. Every second, every minute, every hour of every day we thank God for the gift of this precious child in our lives.

Bob & Chris Atherton

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Joan Fleitas, Ed.D., R.N.
Assistant Professor of Nursing, Fairfield University
Fairfield, Connecticut 06430

Created: March 19, 2000