JUNE 2011 - Becca Atherton - TOF; Pulmonary Atresia, Pulmonary Hypertension, Asthma
Our Becca graduated from Horizon High School Thursday night, May 26th. High school graduation is a milestone in every student’s life, in Becca’s life it is not only a milestone but a Miracle.
She was born with several life threatening heart and lung conditions. From her first breath she has fought for her life. Becca was placed in our family for adoption at 1 month old, having already had one heart surgery. We were told she had a 13% chance of survival to the age of 5. When she was 3 months old we were told by the doctors there was nothing more they could do... they felt Becca had 6 months or less to live. Hospice came to our house to help us through the darkness. Becca ‘graduated’ out of Hospice and here she is 18 miraculous years later. She has had 4 heart surgeries, 18 heart catherizations, a surgery to save her from a life threatening infection, placement of a pacemaker defibrillator, and 100’s of diagnostic tests. She takes 43 pills a day and sleeps with oxygen at night….But looking at her you would never know she had any medical challenges. Some day, to save her life, Becca will need a heart lung transplant. She dreams of becoming a nurse or a psychologist.
Through the years Becca has wanted to make a difference. She is proficient in Sign Language and a member/teacher for Arizona Friends in Sign. She was a member of the Children’s Advisory Board at Phoenix Children’s Hospital for 10 years. She is on the ‘Site Council’ for her high school. Becca has been active in reaching out to other children/teens with heart defects, pulmonary arterial hypertension and chronic illness. Through her blog My Life as a Chronically Ill Teen http://lifeasachronicallyillteen@blogspot.com she is wanting to bring “hope and kindness back into the world.” Becca is also a stanch advocate against bullying. For the last 3 years she has shared with 6th graders at Desert Shadows Elementary School her medical journey and her anti bullying message. This week Becca was presented the “A Person of Character Award” given to one male and one female graduating senior( out of a class of 570 ) at Horizon High School . The recipients of this award among other things “believe in the inherent dignity of all people and treat everyone with respect even those whose ideas & ideologies evoke strong disagreement. They have a strong sense of right and wrong and have the courage and willpower to do the right thing even when it is unpleasant, costly or goes against what others are doing.”
A Hero can be defined in many different ways…
To me a Hero is someone who shows courage even when afraid, someone who does not give up, someone who goes through life threatening challenges with hopeful tears, someone who cares deeply about others, someone who makes a difference in others lives….I believe Becca and so many of our heart children are Heroes.
Like many of you there were times when we prayed for “just one more day”...we could not even imagine Becca’s first day of high school let alone attending her senior prom or high school graduation….and recently Becca shared she didn’t either. These last few weeks leading up to Thursday night she has been so excited and kept joyously exclaiming, “I never thought I would graduate from high school! I can’t believe I’m here, I made it!!!”
Miracles do happen.
With Hope & Joy,
~ Becca’s mom, Chris A ~
She was born with several life threatening heart and lung conditions. From her first breath she has fought for her life. Becca was placed in our family for adoption at 1 month old, having already had one heart surgery. We were told she had a 13% chance of survival to the age of 5. When she was 3 months old we were told by the doctors there was nothing more they could do... they felt Becca had 6 months or less to live. Hospice came to our house to help us through the darkness. Becca ‘graduated’ out of Hospice and here she is 18 miraculous years later. She has had 4 heart surgeries, 18 heart catherizations, a surgery to save her from a life threatening infection, placement of a pacemaker defibrillator, and 100’s of diagnostic tests. She takes 43 pills a day and sleeps with oxygen at night….But looking at her you would never know she had any medical challenges. Some day, to save her life, Becca will need a heart lung transplant. She dreams of becoming a nurse or a psychologist.
Through the years Becca has wanted to make a difference. She is proficient in Sign Language and a member/teacher for Arizona Friends in Sign. She was a member of the Children’s Advisory Board at Phoenix Children’s Hospital for 10 years. She is on the ‘Site Council’ for her high school. Becca has been active in reaching out to other children/teens with heart defects, pulmonary arterial hypertension and chronic illness. Through her blog My Life as a Chronically Ill Teen http://lifeasachronicallyillteen@blogspot.com she is wanting to bring “hope and kindness back into the world.” Becca is also a stanch advocate against bullying. For the last 3 years she has shared with 6th graders at Desert Shadows Elementary School her medical journey and her anti bullying message. This week Becca was presented the “A Person of Character Award” given to one male and one female graduating senior( out of a class of 570 ) at Horizon High School . The recipients of this award among other things “believe in the inherent dignity of all people and treat everyone with respect even those whose ideas & ideologies evoke strong disagreement. They have a strong sense of right and wrong and have the courage and willpower to do the right thing even when it is unpleasant, costly or goes against what others are doing.”
A Hero can be defined in many different ways…
To me a Hero is someone who shows courage even when afraid, someone who does not give up, someone who goes through life threatening challenges with hopeful tears, someone who cares deeply about others, someone who makes a difference in others lives….I believe Becca and so many of our heart children are Heroes.
Like many of you there were times when we prayed for “just one more day”...we could not even imagine Becca’s first day of high school let alone attending her senior prom or high school graduation….and recently Becca shared she didn’t either. These last few weeks leading up to Thursday night she has been so excited and kept joyously exclaiming, “I never thought I would graduate from high school! I can’t believe I’m here, I made it!!!”
Miracles do happen.
With Hope & Joy,
~ Becca’s mom, Chris A ~
July 2011 - Nichole McCoy - Heart Transplant Recipient
Nichole had her first surgery when she was two hours old. She has had five open heart procedures including a Fontan and Glenn shunt. On Dec. 16th she went in to cardiac arrest and was taken to St. Joseph's. While in the cath lab her right lung collapsed. Only a start of the challenge ahead for her. After being brought back on the floor and stablized. Her heart stopped. I watched as they gave her CPR. After 15 they asked me if i wanted them to stop and if they did she would die. Of course I said no! After 30 min. of CPR they were able to bring her back and get her heart beating again. They had to shock her three more times that night as well to start her heart (almost a fourth time but it started again before they had it set up, which was pretty quick). She was then placed on Ecmo Life Support with many problems that happened from that as well. On 12/27 they gave her a Berlin Heart to try and keep her alive till a heart could be located for her. Then on 12/30 she recieved her new heart. She had a hard struggle. She had to learn everything all over again from walking to potty training even eating again but she did it..after all she has been through they found rejection in her blood. She went through ivig infusions to kill the cells. After 5 biopsies (hopefully the last one will be july 8th as long as everything looks as good as it has the last 5.) No rejection has been detected in her heart. I've been told that the heart is doing great as well as Nichole. No nerve damage or brain damage which is what I was told by few Drs is very rare for someone who had CPR done on them for 30 min. She has more energy then she ever has had before and is looking forward to her first year in high school.
So Proud of Her and Loving Her Always,
~Christine McCoy
Nichole's Mom
So Proud of Her and Loving Her Always,
~Christine McCoy
Nichole's Mom
August 2011 - Andrew Aranda - HRHS
Andrew is most definitely the hero of our family and writes his own book on how to live with HLHS. At 23 weeks gestation, he was officially diagnosed with Hypoplastic Left Heart Syndrome (HLHS). He was born at 32 weeks, on June 6, 2007, weighing only 2lbs, 9oz. It was decided to wait a few weeks to allow him to grow before performing his Norwood. The Norwood (with a Sano modification, he was too small for a BT shunt!) was performed on July 2, just shy of his 1 month birthday.
From there, Andrew continued to walk his own path. Andrew’s 2nd surgery was performed when he was 3 months old and replaced a clotted Sano shunt for a BT Shunt. At 8 months old, Andrew’s left pulmonary artery was surgically repaired. Finally at 11 months old, he was able to undergo his 4th open heart surgery, a bi-directional Glenn. After 4 open heart surgeries and 2 MRSA infections, Andrew celebrated his 1st birthday and was able to spend the next few years at home learning to do all the things that babies and toddlers do (eating, crawling, sitting, walking, talking, etc.) all on his own timetable.
As his 4th birthday approached, talk began to revolve around the Fontan, the last stage of the palliation for HLHS. This would be his 5th heart surgery and hopefully the last for awhile. Andrew’s Fontan took place on July 11, 2011 and he was our hero. During his 11 day stay at Phoenix Children’s Hospital (PCH), he took everything in stride and never complained. He charmed all of the nurses and staff and is best known for cruising the halls in his bright yellow Sponge Bob pajamas.
He is currently recovering well at home with no complaints, even with being on a low fat diet and a ton of meds. Andrew is happy and charming and looking forward to starting his last year of preschool once the doctors give the ok. We are truly grateful to all of the doctors, nurses and staff at PCH for the wonderful care and giving us the chance to have Andrew charm his way through life.
From there, Andrew continued to walk his own path. Andrew’s 2nd surgery was performed when he was 3 months old and replaced a clotted Sano shunt for a BT Shunt. At 8 months old, Andrew’s left pulmonary artery was surgically repaired. Finally at 11 months old, he was able to undergo his 4th open heart surgery, a bi-directional Glenn. After 4 open heart surgeries and 2 MRSA infections, Andrew celebrated his 1st birthday and was able to spend the next few years at home learning to do all the things that babies and toddlers do (eating, crawling, sitting, walking, talking, etc.) all on his own timetable.
As his 4th birthday approached, talk began to revolve around the Fontan, the last stage of the palliation for HLHS. This would be his 5th heart surgery and hopefully the last for awhile. Andrew’s Fontan took place on July 11, 2011 and he was our hero. During his 11 day stay at Phoenix Children’s Hospital (PCH), he took everything in stride and never complained. He charmed all of the nurses and staff and is best known for cruising the halls in his bright yellow Sponge Bob pajamas.
He is currently recovering well at home with no complaints, even with being on a low fat diet and a ton of meds. Andrew is happy and charming and looking forward to starting his last year of preschool once the doctors give the ok. We are truly grateful to all of the doctors, nurses and staff at PCH for the wonderful care and giving us the chance to have Andrew charm his way through life.
September 2011 - William Christian -
AV Canal. Dorv, Vsd, Severe Pulmonary Hypertension, Mitral Stenosis, Chronic Lung Disease, Trach
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Our precious boy William was born with many complicating heart defects Av Canal, Dorv, Vsd, Severe Pulmonary hypertension & Mitral stenosis which led to his 2nd open heart surgery mitral valve replacement. He was later diagnosed at age 1 with chronic lung disease and had a tracheotomy placed July 2010.William overcame 2 open heart surgeries, brain bleed, and numerous infections and months in the PCTICU. Those are just a few of the many obstacles William would have in his 2 years of life. He had such a spirit and will for life so his name was a perfect fit. He spent a majority of his life in the PCTICU both at St. Joseph and PCH.
The staff; doctors, nurse practioners, nurses, respitory therapist all became a huge part of our family during our journey with Will. Even people we met along the way other heart moms and of course Mended Hearts. Will was also diagnosed with Trisomy 21 (Down syndrome) which made him extra special. Sharing Down Syndrome Arizona, a local support organization, was there for us from day one with open arms and still are. We love you all. On April 25, 2011 at 1:00 am it was too much for his little body to handle and he became our precious angel. He never took steps here on earth but on April 25th he ran to the arms of Jesus. Just as it was a gift to have William in our lives; all the people and medical staff were a blessing to our family. Love, The Olsen Family and Our Precious Angel William |
October 2011 - Jesus Arriaga - TAPVR
My grandson Jesus Arriaga was born on February 2, 2010 via c-section, soon after delivery the nurses noticed that his breathing was labored and his oxygen saturation was not normal. After numerous tests he was diagnosed with a heart condition called TAPVR (Total Anomalous Pulmonary Venous Return) needless to say we were devastated with the diagnosis and had no idea what it was. Jesus was taken by air ambulance to St. Joseph's Hospital where his heart condition was confirmed. He had heart surgery when he was 4 days old at St. Joseph's Hospital his surgeon was Dr. Nigro and his wonderful team. Talk about an emotional roller coaster for our family, the surgery was a success and he spent a few weeks in the hospital. We spent every day at the hospital, my daughter and my son-in-law would sleep in Jesus' room keeping vigil of his progress. We as a family had never been through anything like this before, it was heartbreaking to see my grandson hooked up to all the machines each night I would pray that he would be released from the hospital but yet I was so scared for him to come home, we didn't know what to expect, what care he needed at home. Finally it was time for Jesus to come home, no medications no special equipment we were thrilled. While his heart surgery was a success Jesus started having seizures, another scary time in our lives. He spent days in the hospital, the diagnosis was that he had an underdeveloped brain. What more could this precious boy handle and his parents, he was placed on seizure medication and the seizures are under control.
Today he is 18 months old and thriving, he is receiving physical and occupational therapy and is starting to crawl. He is vocalizing, when he said mama we all had tears in our eyes. Jesus has taught the family what courage and faith are about, he is our little warrior.
-Ginnie (Jesus' Grandma)
Today he is 18 months old and thriving, he is receiving physical and occupational therapy and is starting to crawl. He is vocalizing, when he said mama we all had tears in our eyes. Jesus has taught the family what courage and faith are about, he is our little warrior.
-Ginnie (Jesus' Grandma)
November 2011 - Marissa Villarreal - HLHS
I think my daughter Marissa is a heart hero. Actually, every child born with a congenital heart defect is a hero in my book - but the reason why I think my daughter deserves this honor is simple: she's a survivor. Born in March 22, 1996 Marissa seemed to be a normal, healthy baby. She weighed 8 pounds, 4 ounces, and everything went well in the hospital and we were discharged without any issues. A few days after bringing her home, Marissa started developing feeding issues; vomiting, sweating while eating and screaming for no apparent reason. I would cradle her, trying to comfort her, and after awhile she would calm down. When Marissa was about 6 weeks old, she developed a dry, shallow sounding cough and had a grayish complexion. On top of that, she just wasn't gaining weight and despite reassurance from her pediatrician, I was not convinced nothing was wrong. So I took her to the emergency room and within the hour they had us in an ambulance in route to Phoenix Children's Hospital. It was there I was told Marissa had a heart murmur, and would need an echo-cardiogram to determine what the problem was. I was terrified; I did not know what to expect, but nothing could have prepared me for her diagnosis: Hypo-plastic Left Heart Syndrome, a deadly defect that required immediate surgery or there was no hope for Marissa. The doctors were amazed that her PDA did not close, and she was still alive after 6 weeks. We were flown to Los Angeles California where Dr. Vaughn Starnes performed Marissa's Norwood procedure. She was in the hospital for 2 weeks and was released. In November 1996, Marissa had her Glenn-Shunt procedure...everything went well, and she was released again after 2 weeks. On October 7, 1998 Marissa had her Fontan procedure, and that is when she had terrible complications. The surgery went fine, but Marissa crashed the day after the surgery, her blood pressure dropped so low, she went into Kidney failure. She was on dialysis and I was told that if she did not turn around soon, she would not survive. I have never prayed more than I did during that time..nothing is worse than watching your two year old child fight for her life and there is nothing you can do! Prayer does work, and Marissa slowly recovered and after 5 weeks, she was released from the hospital. Today, Marissa is a 15 year old 9th grader with friends, a social life, and plans for the future. She is full of life, and has a spirit that everyone can feel when they are around her. She is the definition of miracle and she deserves applause for all that she has been through. Although there may be challenges ahead for her, Marissa does not let that stop her..she looks at life as a privilege; and she takes nothing for granted..she loves God and even told me when she was released from the hospital after her Fontan " Mommy, I was okay, I seen the Angels!" that's when I knew to thank God over and over because he could have kept her, but he gave her back, and I am forever grateful...She's a Heart Hero every month of the year, and it would be nice to let everyone else know too!