To celebrate Heart Month and all of the families The Texas Center for Pediatric and Congenital Heart Disease at Dell Children’s is honored to care for, we would like to introduce you to a very special family with a powerfully funny, kind, energetic, fedora loving boy we are smitten with. Meet Lincoln and his #1 fans, the Contreras family. It is not a coincidence that Lincoln’s birthday is February 1st, he perfectly kicks off Heart Month every year and just celebrated his 9th birthday. Lincoln has big plans for the future and his family’s faith combined with world class heart care will be there for him along the way.
A very special thank you to Rachel Contreras for sharing their family’s journey of much more than a thousand miles with us this month. Through her words we get just a glimpse of all that follows a congenital heart diagnosis and the impact it truly has on a life and a family. The Contreres family exemplifies gratitude and love for the care around them and this heart month, we at Dell Children’s, are grateful for them.
Lincoln’s Heart Journey as lived by Rachel Contreras, Lincoln’s Mom
October 2012 – Lincoln was diagnosed with a congenital heart defect prenatally at 20 weeks gestation.
November – December 2012 – Lincoln’s first cardiologist gave an official diagnosis of CCTGA, Congenitally Corrected Transposition of the Great Arteries, a rare heart defect. Only 0.5 to 1 percent of all people with heart defects have CCTGA. This means there are about 5,000 to 10,000 people in the United States with this condition. In CCTGA both ventricles (pumping chambers) of the heart are reversed.
February 2013 – Lincoln was born 6lb 11oz at 36 weeks gestation due to his mother’s preeclampsia. His only noticeable symptom at birth was a heart murmur. From the hospital we drove directly to our cardiologists office for an echocardiogram (echo).
February – May 2013 – Lincoln went to weekly cardiologist visits for his first month of his life, and then bi-weekly for his next 3 months.
June 2013 – Lincoln had his first open heart surgery at 4 months old. His Pulmonary Artery Banding (PAB) surgery was performed at Dell Children’s. PAB is a palliative surgical technique used for the correction of congenital cardiac defects, characterized by pulmonary over-circulation caused by left-to-right shunting of blood. PAB is reserved for palliation in a certain subset of infants with complex congenital heart disease. We stayed at the Ronald McDonald House for the first time. This surgery was done to condition his heart for a future surgery known as the double switch. By the time Lincoln was 4 months old we had learned so much about the world of congenital heart patients and we’re continually grateful for his care.
July 2013 – February 2014 After Lincoln’s first open heart surgery we were able to spread out his cardiologist appointments to just 1 per month.
February 2014 – Lincoln had his first catheterization at Dell Children’s. The heart surgeon that was at Dell Childrens during that time had a surgery canceled the day Lincoln went in for his catheterization, so he went in and observed Lincoln’s procedure. After Lincoln’s catheterization we were advised to transfer Lincoln’s care to Children’s Medical Center in Dallas, TX which, at the time, had a higher level of expertise for Lincoln’s diagnosis.
Away from Home For Care
March 2014 – We made our first trip to Dallas to have the planned double switch operation (this happened to be right in the middle of the final four basketball tournament held in Dallas TX that year which proved very difficult to find lodging for our family helping care for our older daughter). Being away from home, away from Dell Children’s made everything a bit more difficult. All pre operative procedures were completed and surgery was officially scheduled.
April 2014 – Lincoln went in for the planned double switch operation, and approximately 20 min after leaving him in the heart team’s care the surgeon called my phone and let me know that he was not going to be able to perform the planned double switch. He told us that Lincoln’s left ventricle would not be strong enough to sustain him. The surgeon said “if I do this Lincoln will not survive, but I have to replace the band so then we will live to fight another day”. I responded “please keep him alive”. Shock would be an understatement – I just stood silent and prayed “Oh God Lincoln is yours, but please let me keep him”. The surgeon stitched the pulmonary artery instead of putting a band around it. We were told that if they needed to go in later and make adjustments to the stitches this could then be done less invasively in the cath lab instead of having another open heart surgery. Lincoln was inpatient for about 4-5 days, and we lived at the Ronald McDonald House in Dallas an extra week after discharge to be close to the hospital for post operative appointments.
April 2014 – During our time in Dallas they advised us to choose a cardiologist in Dallas, because now, according to the care team there, Lincoln would never be able to have the double switch operation. They strongly believed he would end up on the transplant list, and that it would be best for us to already be at a transplant hospital. Lincoln’s cardiologist since birth, Dr Finnigan, in Austin officially retired while we were inpatient in Dallas, we knew this was coming – he had told us, so now we became regulars to Childrens in Dallas, which felt so far from home.
Dallas Children’s was 4.5 hours from our home and we made this trip 3 more times before the end of 2014. We would drive to Dallas the day before appointments and spend the night at a hotel near the hospital. The next day Lincoln would have his cardiologist appointment, and then we would drive back home 4.5 hours that afternoon. Heart appointments became our vacations for the next 5 years. From the time Lincoln was 16 months old to 3 1/2 years old he would become anxious and hysterical about everything in the heart center from EKGs to echos and absolutely anything they would try to do to him. They tried to give him medicine to relax him, but that never worked. When Lincoln was inpatient in Dallas he learned how to gag repeatedly and then throw up whatever medicine he didn’t like the taste of (this was NOT a pleasant experience). Even now he has a very sensitive gag reflex. For two years Lincoln had to have sedated echos in the operating room. This caused a great deal of stress when it came to scheduling because our home was so far from care in Dallas.
2014 – 2016 – We traveled to regular cardiologist appointments every six months for the next two years. Our cardiologist during this time decided to move out of state, so we changed to a new cardiologist in Dallas. Transitions within our care team always made us feel anxious even though our faith is steadfast and we knew God always had a plan.
2016 – 2017 – An unexpected new friend made our appointments much better. With the help of the Dallas heart center service dog, Lincoln was able to finally lay still for an echo at 3 1/2 years old. Lincoln also had his first cardiac MRI done during this year. His cardiologist in Dallas was gracious enough to order the MRI to be done at Dell Children’s in Austin so that we could save both time and money spent on travel. We were thrilled. While waiting, we reminisced about the time we had spent at Dell Children’s only several years before and dreamed of being able to return someday when Dell Children’s was able to build a program and become a transplant hospital.
2017 – 2020 – We continued to have cardiologist appointments every six months. As Lincoln got more comfortable with echos and all of the other “simple” procedures in the heart clinic, life did become much easier and less stressful at appointments. At some point Lincoln’s body popped the stitches that were placed inside of him during his second surgery in his Pulmonary Artery. The guidance at this point was for us to just watch and see, and that he was still extremely likely to be on the heart transplant list at some point.
During these years we followed Dell Children’s on social media and watched closely as they began to make progress in building the heart program. We read that Dr. Charles D. Fraser had arrived at Dell Children’s and Dell Medical School at The University of Texas and had renewed hope of care for Lincoln at home. We knew his reputation of course and I would get very excited and share videos with all my family every time Dell Children’s shared their progress of strides to officially be a heart transplant hospital- that’s when we could officially return.
June 2020 – Lincoln’s current cardiologist moved to a different Children’s hospital in the Dallas area, and we received a letter from our insurance that they would no longer cover her as Lincoln’s doctor.
August 2020 – I saw multiple videos with Dr Fraser and Dr Castleberry as they announced the plans for caring for the critical heart kids of Central Texas and beyond. We made the decision to try to come back home to Dell Children’s – I never wanted to control or demand my way in any of Lincoln’s care, but to trust in God’s direction. When I say that we would “try to come back home to Dell Childrens” this meant if it was extremely difficult to transfer his care or it seemed that we were being hit with closed doors instead of open arms – then we would have just stayed in Dallas.
I called Dr Castleberry’s office and explained Lincoln’s case. We had an appointment the next month, and they received his files from Dallas Children’s seamlessly. Nothing short of miraculous, changing doctors is not always a smooth process, much less hospitals.
September 2020 – Lincoln had his first appointment with Dr Castleberry, and from the first visit Lincoln has seen her more as his friend than his doctor.
February 2021 – We received a phone call from Dr Fraser’s office saying that they would like to schedule a consultation. This really caught us off guard. We met with Dr. Fraser and his team shortly after, and he began to share with us some of the potential interventions that could be helpful to Lincoln’s specific situation. It was a little scary and encouraging to have someone giving us a whole new outlook on interventions that might sustain Lincoln for longer rather than assuring us that transplant someday would be our only option. The Texas Center for Pediatric and Congenital Heart Disease at Dell Children’s is clearly a very different kind of heart center.
March 2021 – Lincoln had a cardiac MRI. Back at Dell Childrens in the pre op area that we had a history with so many years before. I had a huge sense of relief to be back home at Dell Children’s, just 25 miles from our house. A weight was lifted.
April 2021 – Lincoln had a cath scheduled to help with planning for his upcoming surgery. This was our second visit to the pre op area in the past two months, so Lincoln began to make friends with all the people – it’s really cute when they become comfortable and happy with the nurses and other staff that help with all their care.
May 2021 – Surgery scheduled – we had our pre op appointment – came back the 20th of May for surgery. As we waited for our surgery time Lincoln was a bundle of energy just like he always is, and his only question for everyone who came to see him was “will I get to see Dr Fraser before my surgery?” By this time Lincoln had had several interactions at appointments with Dr Fraser, and Dr Fraser was now his friend who just happened to be the one operating on his heart. Everyone that came in our pre op room told Lincoln “no you won’t see him today.” A short time later Dr Fraser walked into our pre op room, and told us that there would be no surgery that day and that it would have to be rescheduled. Someone else needed Dr Fraser that day, and while we were disappointed (because we were ready to be done with surgery) we fully understood that if someone else needed immediate attention. We began to pray for whoever it was that needed surgery more than us that day. Lincoln was thrilled to not have surgery and he jumped up on the pre op bed and said “that’s ok Dr. Fraser I’ll see you next week”.
May 26, 2021 – Surgery day was finally upon us. We were anxious to be on the recovery side of surgery. Lincoln loved all the attention and many many visitors that you get right before you go in. He took the relaxing medicine they gave him much easier than I expected, and then of course said some really silly things that I won’t tell here to save him from embarrassment later in life.
We were told to expect an 8-10 hour surgery from the list of procedures they had planned. As we waited in our private room we got several updates – when all the lines were in and they were about to begin and when he was on bypass successfully. The next call was that they were closing him up – it had only been about 4 hours, so we were confused and of course trying to imagine what we were about to be told. Dr Fraser met with us and told us that he had successfully put another band on Lincoln’s pulmonary artery. Several other procedures had been planned, but Lincoln’s heart began to be overly stressed, so the other procedures would have to wait.
We saw him a short time later – the wires, so many wires. I tell everyone who sees pictures of how sad it really does look after surgery – those wires and that team surrounding him that saves Lincoln’s life. Focus on the outcomes here, not the wires and pitiful faces -it can be really difficult when they are crying because of some discomfort that you know is saving their life. He woke up with the tube in his throat and began pointing to the tube and then to his stomach. I asked him what? not knowing exactly what he was telling me at first – and then because I know my son I said “you’re hungry”. Those around his bed all got a laugh from his insistence to eat, and shortly pulled the tube out so he could eat.
Getting the arterial lines pulled out and the main drain tube are the hardest part of recovery. Lincoln wanted to start moving around, so convincing him to sit on the side of the bed or to try to walk was not super difficult. He absolutely loved it when all the doctors would make their morning rounds – he wanted to talk to them everyday. He even dressed up and put capes on and played music for them with his whistle.
June 2021 – February 2022 – We know so much now, especially that every heart patient is unique. Our journey doesn’t look exactly like any other heart journey and ours isn’t over. Just recently we had a cardiac MRI, so our journey continues ….