“My name is Dora Pinon and my son Daniel James Pinon was born on September 12, 2011 in Harlingen TX. I was having a hard time during labor, the nurses were still prepping the room when I felt Daniel coming, the nurses checked me and sure enough Daniel was here, because of the fast delivery Daniel had the umbilical cord wrapped around his neck, thus creating bruises on his arms and face. That night as I slept with Daniel I noticed he was moaning in his sleep but didn’t think anything of it since I myself moan in my sleep. In the morning when the nurse came in she asked how my night went. I told her he did great but noticed he moans. The nurse took one look at him and picked him up and ran out the room! I didn’t know what just had happened, where was she taking my son? Later she told me she used to work in the NBICU and saw that Daniel was blue. I told her I thought it was his bruises. She said the reason he was blue was more than likely due to the umbilical cord causing lack of oxygen. So they kept Daniel in the NBICU that day.
The next day as we were both getting discharged the doctor on staff noticed I had gestational diabetes and was on insulin during my pregnancy so he order an exam for a cardiologist to check Daniel’s heart. He said he just wanted to make sure everything was okay. When the cardiologist performed the sono he said everything looks good, as he said that he noticed something on the monitor and asked the nurses why is this child here in the NBICU, the nurses said due to lack of oxygen because of the umbilical cord. He then asked me to step into a quiet room and he would be right with me, at this time five nurses rushed to his side. The doctor finally came in and told me Daniel has TAPVR! They flew him to Corpus Christi TX where they would have to perform OHS to repair his vein. Daniel was one week old when he had OHS. My son was in recovery for two days before they closed his chest due to swelling, unfortunately the surgeon told me the opening he made was too narrow causing blood clots so they had to perform yet another surgery when he turned 1yr old. My heart broke that day, knowing my son was still fighting for his life. We stayed in the hospital for 3 months.
When Daniel turned one his cardiologist said we could go in for the surgery or go to San Antonio and see a doctor who performs heart catheterization procedure. Basically they make an incision on his neck and groin area and inflate a balloon in his veins to open them up. On October 25th, 2012 we headed to San Antonio. Daniel had two heart catheterization done and it worked!! Daniel’s veins are growing with him and is doing amazing! I am extremely blessed for this invasive procedure. Daniel is now 4yrs old and living life!”
“Graysen was born May 1, 2014. He was born with the heart conditions DORV, AV Canal, TAPVR, and also no spleen, a malrotated stomach, and hiatal hernia. Graysen’s conditions together not only place him in the CHD category but he is also called Heterotaxy. Heterotaxy means that there are organs missing, duplicated or on opposite sides of the body.
Graysen had to have open-heart surgery at 8 days to repair his TAPVR and place a band around his aorta. Recovery took a month and a half but he did awesome. He was sent home with a feeding tube and many medications to take. His band is working great still and we are waiting as long as we can for his second open-heart surgery or until he starts going into heart failure. He will have a catheterization first to determine which surgery. He will also need one last open heart surgery at 2-5 years old but with his Heterotaxy there could be more throughout his life. He will also need surgery for his malrotated stomach. He will be a single ventricle probably meaning only one ventricle of his heart will work.
Kids with CHD and Heterotaxy have many difficulties throughout life with their heart, and other conditions associated with their organs. Life expectancy is 2 years old but many live longer now with advancement in medicine. Graysen has asplenia so he is also immune compromised and we have to very careful during the winter seasons when the flu and RSV are high. Going to public places and daycare are not possible right now. He will always be highly susceptible to any illness like a common cold, which will put him into the hospital immediately for monitoring. His highest risk during surgeries, are infection. There is little known about Heterotaxy and CHD combined and there is no specialty for it so it’s left to cardiologists to handle.
Right now he is a normal little boy and we are very lucky that he does not have the problems that a lot of kids with CHD and Heterotaxy face. He has troubles with his tummy and gas from time to time and no longer needs his feeding tube. He loves his older brother, the outdoors, and Mickey’s Clubhouse. He is eating cereal and other foods and eats like a horse. Graysen is also very very strong. We have always treated him as normal and I think that has a lot to do with his progress.
Emotionally and financially it has been rough but we made it through it and are stronger for it. We have grown and learned so much about people and life. There is not a lot of support or information for Heterotaxy and CHD babies, and parents, except for a support group on Facebook. It has been a great way to communicate with people locally and ask questions about what others have gone through and to give us hope.”
“Sally Wiley was 22 weeks pregnant when she and her husband Jay learned their unborn son Anders was developing a devastating heart defect known as Hypoplastic Left Heart Syndrome (HLHS), which would severely disable and shorten their baby’s life.
The Wileys quickly traveled to Boston where medical professionals had developed a cutting edge procedure allowing doctors to operate on babies’ hearts in utero. Sally and her baby underwent the fetal heart intervention at the Boston Children’s Hospital — only the 37th patient to undergo this experimental procedure.
Anders Wiley was born a few months later and his first few years were rocky. He has undergone a half dozen heart procedures in the nearly 8 years since he was born and countless hours of physical therapy. Anders will be celebrating his 8th birthday in February and is now an energetic, happy 2nd grader who plays flag football and practices karate.
Anders has been featured on the CBS Evening News and Dr. Sanjay Gupta devoted a chapter to Anders’ story in his 2009 book Cheating Death: The Doctors and Medical Miracles That Are Saving Lives Against All Odds.”
At 37 weeks, Trevor was born on May 29, 2007 via emergency cesarean section; even though he was not tolerating labor he gave no immediate signs of distress. He was pink and had great Apgar scores. Two days later, on the evening ofJune 2nd the on call pediatrician came by and said to us, “he sounds different than he did yesterday” at that point Trevor was then taken to the NICU for an echocardiogram and EKG. After some testing a cardiologist was called in, it was apparent that something was very wrong. We were told that he had a congenital heart defect (CHD).
That evening Trevor was transported by ambulance to St. Joseph’s Children’s hospital in Tampa, where he was admitted to the pediatric cardiac intensive care unit (PCICU). Trevor was diagnosed with Truncus Arteriosus.
Trevor underwent his first open heart surgery at just eight days old. It lasted over seven hours. In February 2009, a stent was placed in the LPA due to the chronic narrowing not long after that Trevor had his second open heart surgery on April 15, 2009.
Trevor and his big brother Nicholas play hard together; they are best friends and they look out for each other. God has a plan for Trevor and we can’t wait to see what it is. Thank you for reading our story.
Love, Hope & Heart Hugs,
Zate, Sarah, Nicholas & Trevor Berg
“On February 6, 2013, I stood in a hospital room and my world ended as knew it. I transformed from a typical mother of 3 little boys to a vigilant advocate, fighter and a tad bit crazed mother of warrior. At just 8 weeks old, my baby Ethan was in for the fight of his life. Being considered healthy at birth and now hearing he was in severe congestive heart failure forever changed me and baptized me family in a fight I would not wish on anyone.
The doctors didn’t think anything was wrong with Ethan but occasional shortness of breath, consistent hiccups and slight occasional wheezing worried this mother of three enough to demand some diagnostics were done to confirm he was okay. Well after a chest X-ray and echocardiogram it was determined Ethan was near death and needed surgery within the next day to save his life. He was immediately put on a medication to assist his heart in beating and transported to TCH for surgery the next day. The diagnosis was a COA so severe it had caused him left ventricle to slowly give out. So on the morning of February 7, 2013, we handed out newborn baby over for heart surgery.
Today, Ethan appears to be a healthy, strong and resilient little boy. He is smart, curious and a delight. He will forever live with his heart defects, but he is a fighter.”
Lucas was born with a litany of congenital heart defects (TA, L-TGA, ASD, VSD) but is essentially a single left ventricle heart warrior. We first discovered he didn’t have the typical clover-leaf heart at a 16 week ultrasound and followed his growth with regular echos until he was born. We met with doctors at Texas Children’s Hospital and mapped out a plan of action and surgeries so we knew what he was facing (the usual 3 phase single ventricle surgeries).
When Lucas was born in August 2011 we were happy to learn that with his full size PA and enough odd flows, he got to skip the first surgery (BT Shunt). We went home after only 11 days in NICU. We were back again for a septostomy (cath procedure to increase his ASD) in October which helped us make it to December for his Glenn.
Lucas had his Glenn with Dr Fraser at TCH on December 15 and we were home from the hospital just in time for his first Christmas. We have our regular cardio checkups and are planning for his Fontan in September 2015 (after a trip to Disney and his 4th birthday).
“Joey was 2 years old when he started begging for a little brother. Having two female cousins his age, he wanted to even the playing field! Imagine Frank’s and my delight when an ultrasound revealed another little boy would bless our family.
What the ultrasound didn’t reveal was that Alex would be born with a critical congenital heart defect. We were blissfully unaware that once Alex was born, his life would be jeopardized. Despite frequent protests that something was wrong after he was born, Frank and I were told repeatedly that Alex was fine. It wasn’t until his 2nd well-baby checkup that our world turned upside-down.
Alex and I rode in an ambulance down I-35 over 2 hours to a hospital in San Antonio, Texas. Tests revealed Alex had a serious heart defect requiring emergency surgery. Our doctors recommended we love him and take him home for what little time he had left. Instead we opted for an experimental surgery – the first of 3 scheduled surgeries. Given only a 1:4 chance of making it to age 5, Alex defied the odds and is now 20 years old.
Congenital heart defects (CHDs) are the number one birth defect but I didn’t know that before I started doing research to better understand Alex’s condition. I had no idea that 1 in 100 families are confronted with CHDs and that it is one of the leading causes of death amongst newborns.
Alex’s heart defects have had a profound effect on my life. It spurred me to become a writer, advocate, publisher and public speaker about CHDs. Because of Alex I have served as The Children’s Heart Foundation Texas Chapter Vice President and look forward to continuing to work with the organization in the future.
Alex has astounded people in so many ways. He graduated from high school on his 17th birthday and then a week later walked across a stage to receive his diploma from Texas State Technical College – an Associate’s Degree in Applied Sciences specializing in Robotics. A few months after that, he had an open-heart surgery to revise his previous surgical repair. A year later he was at NYU-Polytechnic in Brooklyn, NY studying electrical engineering. Now he is back home, after deciding that his passion is writing. He has completed his first book and is working on the second in his series. I don’t know what the future holds for Alex, but I’m so thankful for the research that went into developing the experimental procedure that saved his life.”
In Feb of 2016, the Dr. started discussing replacing Alex’s pacemaker and letting us know it would be just over a year and that they wanted to be ready and we were nearing a point he would be needing to be more closely monitored. We discussed this with Alex as we had been doing for a couple of years. He let us know that he didn’t want any more surgeries. We asked him if he knew what would happen if he did not have a pacemaker. He answered, “I know I can’t live without it but I’m tired.” It was such a sad but truthful answer. We went back to his medical team and asked the hard questions. Which we pretty much knew the answers to. “Will the surgery permanently fix anything?” Their answer was, “No. It will be a temporary fix.”
Alex’s response was, “Then not gonna do it.”
We went ahead and made plans for Alex to enter hospice when the time came. We chose a hospice team that would be home based as this fit our family the best but even with our kids this is a very personal choice. Some parents are not going to be equipped to deal with all that will come. I just want you to know, this is ok! If you are going through this, remember the hospice team is there to support your needs as well and are there for you and your family. Sorry, just felt someone would need to hear that.
Alex chose to continue to be monitored except for the pacemaker until he felt he was too tired to make the long trip to Austin. He was admitted to hospice services on Oct 30, 2016. We continued to discuss the pacemaker change with him all while supporting his decision and telling him it was ok. As a parent this is hard but at this time Alex had turned 18 so it was not our choice any longer. Sure, we could have taken the harder road as people would say and gone to court and gotten guardianship and forced surgery. This, again, is a personal choice. We chose to take the high road and support our child in the hardest adult decision an 18 year old could make. We questioned him and talked with him and knew he was certain of the future he was choosing.
The hospice team loved every minute of caring for Alex. We chose Heart to Heart Hospice of Lufkin,Tx and I can’t say enough good things about this team. They are all top notch!!!! Wendy, Janna and Grant as well as so many other awesome people we have met along the way. Jennifer the nurse that admitted Alex came out on a weekend morning and the two of them just had a blast. It was a little party to admit an 18 year old to hospice. Alex forever changed each and every person he met and as a mother that is something that I will always cherish. With the help of this hospice team Alex planned his goodbye to our family. Grant helped him make a CD to be played at his memorial. He shared stories that he wanted us all to remember.
In January, we were going shopping to upgrade our RV so that we could have a separate room for when things changed and have room for a hospital bed. That was on January 4. That morning while we were out Alex became unresponsive. I immediately called Janna and let her know what was happening she asked if we could drive him to Lufkin and we were off. When she met him and checked him she knew something changed Alex. Our Alex, would not smile for her and barely acknowledged her. This was not him. We called the campground we were at and immediately management arranged for a cabin. Janna had a hospital bed delivered and oxygen. Alex stayed mostly out of it that afternoon and evening with brief periods of coming back to us. Friends arranged to travel in and we got his brother on a flight home from Maine. Davis got in Thursday evening and my mom stayed with Alex while we went to the airport. She said he was wide awake when he heard Davis was on his way. He was laughing and joking when we walked in. He played and visited with his brother and his friend Jon for a few hours. He awoke Friday morning and played with them some more we had guarded hopes that Alex just scared us and all would be back to normal soon.
Friday morning around 11:30 Alex went to sleep. He was comfortable. We stayed by his side and he passed Friday evening Jan 6, 2017 at 9pm. Although, this is a hard story to read and for me to write please know that Alex in the end made his own decision and was at peace with it. Our family continues to go day by day we miss his laughter and his smile. However, we know that, for Alex, we allowed him to make the best choice for him. CHD is an awful life to live often our child felt like he was watching from the outside in on life as he could not do many things kids his age would do. Now he is playing with his best friend who was also a warrior that passed before him and many others. He still shows us signs he is here and with us and will forever be remembered by all those that met him. We are very thankful that you allowed him to be the Honorary Chair of Joaquin’s Playhouse.
Much love and continued support
– ROBERT and cheryl espinosa
Read more of Alex’s story here.
Easton was born with transposition of the great arteries – basically, the two main arteries in his heart were switched, so the blood and oxygen were going to the wrong parts of the body. It wasn’t until he was born that they noticed something was wrong with him – his lips, fingertips, and toes were a little blue and his oxygen was a little low.
They put the oxygen mask on him but it never raised his oxygen like it should have. They then transferred him to the NICU for further testing and after about 9 hours of x-rays, labs, and ultrasounds it came back he had transposition of the great arteries. The next day he was transported to a children’s hospital and had a cath put in his heart.
The children’s hospital flew in a doctor from another town to help with his open heart surgery that he had at seven days old. At 1 years old he was taken off all of his heart medications and he is a healthy little boy now.
“My son, Evan Thomas Henning, was born with 6 CHD’s. We learned about 2 of them in utero at 22 weeks of pregnancy. At that time Evan was diagnosed with Hypoplastic Left Heart Syndrome and a common atrium. He was born in Austin, Texas at Seton Hospital-Main to a waiting team of specialists. Next, he was transferred to Dell Children’s Hospital to have a heart cath.
At 4 days old, Evan was flown to Children’s Medical Center in Dallas and he was admitted to the Cardiac ICU. They completely checked him out and found that he had 4 other heart defects. So at 1 1/2 weeks old he had his 1st open heart surgery, and and he was immediately put on the heart transplant list. He spent 6 months in the CICU, and he continued to get stronger and reach milestones.
At 6 months he was moved to the cardiac floor, and 2 weeks later we got the most wonderful news: We have a heart for Evan!!! They performed his heart transplant, along with reconstructing his pulmonary arteries and veins and his aorta. He came through the surgery great and has not had any problems with rejection at all. We stayed at the Ronald McDonald House of Dallas from August 7th to Memorial Day weekend.
It was the scariest thing to go home, but we eventually got used to caring for him. He is now a busy and active 3 year old, and we couldn’t be any more blessed with his progress. We will be forever grateful to the donor family who decided to donate their child’s organs and give my child a chance at life.”
“Amaya Guerrero was born on November 20th, 2012 with Hypoplastic Left Heart Syndrome (HLHS) in San Antonio TX. She underwent her first surgery at 6 days old. Instead of getting better she struggled alot. At 2 months old she suffered a stroke, likely caused by a clotting disorder and the stent in her heart. She suffered from seizures due to her stroke. She later got a Gtube and Nissen placed. After 5 months in the NICU in San Antonio there was nothing else they could do for Amaya. A second surgery was too risky. After alot of fight and pushing Amaya was air flighted to Children’s Medical Center of Dallas to undergo a heart transplant evaluation. The doctors there did all they could to save Amaya’s native heart but nothing could be done and she was listed for transplant. She took a turn for the worse soon after and had to be placed on a ventilator. Infection almost took her from us and she battled high fevers. One day shy of 3 months waiting she received her life saving heart transplant. After nearly 9 and a half months in the hospital Amaya finally got to go home. We have dealt with some rejection but other than that is doing very well and has come such a long way.”
My name is Crystal Brown and my daughter is Alexis Brown, a 10yr old Heart WARRIOR, and we are from Denison, Texas. North of Dallas. 11 surgeries. 4 open heart. Tetralogy of Fallot..Alexis is that kid. That special kid that’s got it all. The one you meet and walk off saying that kid is going to change the world. July 2, 2015 was the day Alexis had her 4th open heart. This July we will be going in to have vertebrae removed and titanium bars put down her spine. Alexis is a VACterl kid with Tetralogy of Fallot. This year was her first year to openly talk about her condition. Social media helped her. I have seen a huge difference in the way Alexis felt about her scars. Now she wears them proudly. Encourage these kids to talk!! Alexis also video documented her surgery. I have the videos if you would like to see. Her courage is heartwarming.
Joaquin Emilio Salazar is the son of Paul and Christie Salazar, a founding member of CHF-TX. Joaquin was diagnosed in utero with Tricuspid Atresia and was born in Corpus Christi. Once born, cardiologists discovered that Joaquin had two more defects—Interrupted Aortic Arch and Transposition of the Great Arteries. A plan was put in place to have Joaquin undergo the first of three open heart surgeries. His first was at seven days old and his second was at six months old. After his second surgery, Joaquin went on to live a full life that included playing with his older brother, attending school in Brownsville and spending time on South Padre Island as often as possible. Joaquin was a sweet and vivacious little boy with a knack for drawing people in. He loved Mickey Mouse and loved his visit to Disneyworld in July of 2013, several months before his third surgery, the Fontan. When he went to the cardiologist a month before his surgery the doctor told his parents that everything looked great and to expect a positive outcome. Joaquin’s parents were looking forward to seeing Joaquin gain more energy as a result of the procedure. Joaquin went in for surgery on October 1st and passed away from complications of his Fontan on October 4th at 4 years old.
In memory of Joaquin, CHF TX holds an annual fundraiser, Joaquin’s Clubhouse, in July to celebrate the lives of those who fight CHD and remember those who have lost that battle.
Nevaeh Goslin’s 3 years of life we thought she was a normal girl. On July 27th, 2016 Nevaeh went for her 3-year checkup. Her doctor noticed that she wasn’t herself and that her breathing was off. Nevaeh’s doctor sent her to the hospital for an x-ray. Later that day we received a phone call from Nevaeh’s doctor saying, “You need to take Nevaeh to the hospital right away, her heart is swollen.” We took her to Kingwood Pediatric Hospital, they couldn’t figure out what was wrong. I remember the doctor just staring at her for maybe 20 minutes not saying a word, then finally he said, “Nevaeh is in Acute Heart Failure, and I cannot tell you why, we will be transferring her to Texas Children’s Hospital. Hopefully they can find out why.” We were devastated.
We were at TCH and they started to run test on Nevaeh, doctor after doctor came to look at her. After what felt like a lifetime they finally told us what they found. She has a 1 and 1 BILLION CHD called Cor Triatriatum Sinistrum. She needed open heart surgery right away or she would die. Sense this CHD was not found at birth, her heart and lungs were a mess. They couldn’t give us a percent of weather she would live or die, need a heart and lung transplant, or have a machine help her heart beat. They told us that they would have to stop her heart and take her heart out of her chest to remove the membrane that was making her have 3 chambers instead of 4. We couldn’t believe what we were hearing, three days ago our daughter was fine, running around happily with her older sister.
On July 28th, 2016, she had her OHS. After about 7 hours of surgery, her chest was closed and her heart was beating on its own!!! It was like yesterday when my husband and I came out of that conference room and yelled in joy to my family and friends, “Her chest is closed!!!” Nevaeh fought all the odds, she came out of surgery with nothing to help her heart beat and she was alive!!! We couldn’t of have been happier. It has been 6 months and she has her ups and downs, but overall she is doing amazing!!!
Cor Triatriatum- (or triatrial heart) is a congenital heart defect where the left atrium (cor triatriatum sinistrum) or right atrium (cor triatriatum dextrum) is subdivided by a thin membrane, resulting in three atrial chambers. This CHD makes up for about 1-2% of all CHD.