Every Heart has a story. We have a heart mom that is hosting a night of Heart Stories. Thanks Stef, you have been a huge help to me lately. I wanted to get in on the discussion so here is our story.
Ellie’s journey is a complicated one, but one that could have had a whole different path with awareness of CHD. Ellie was born in December of 2008. She was the fourth little girl born in our family. Her next oldest sister unexpectedly died in utero, so during my pregnancy with Ellie, she was closely monitored. During a routine visit to the neonatologist, Ellie showed signs of tachycardia. After that went away, she developed a heart murmur. For the rest of the pregnancy, we continued to hear it till I gave birth. The doctor did not hear it immediately after birth, but when the pediatrician came to the hospital, he could hear it again.
We took her in for her one week and then her two week visit and both times the murmur was heard. We took her in at two months and same thing happened. The doctor told us that most murmurs are benign. We felt a little relief but it remained in the back of our minds. A few days later, she came down with RSV. We were scared, but she managed to get through it o.k. with outpatient treatments given at the hospital. About two weeks after that, she developed a Horner’s Syndrome. Her right eye drooped and her pupil was extremely small. We thought she had a stroke! The pediatrician referred us to an eye doctor after we insisted that her eye was not normal. After visiting the eye doctor, she diagnosed her with the Horner’s Syndrome. This is usually caused by a pinch on the sympathetic nerve. An MRI was done a few days later. This original scan showed nothing according to the person that read the scan. Her weight at this time stayed the same for the next few months. A little over ten pounds. We noticed that her legs and arms had a rash on them. The doctor thought it could be fifths disease or an allergic reaction to the MRI that she had. We were sent by the eye doctor to Primary Children’s Hospital for a second opinion on her eye. She felt like something was pinching it because Horner’s Syndromes don’t appear overnight.
At the Moran Eye Center by Primary’s, the doctor performed a test that confirmed the Horner’s Syndrome and took a look at the MRI that we brought up from St. George. They found a cancerous tumor in her neck! A neuroblastoma. I still remember the shock I felt when the doctor came in and said that she had a tumor. A few days later, a repeat MRI was performed and the tumor showed signs of shrinking! We were to follow-up six weeks later. During those six weeks we returned to our Pediatrician in St. George with symptoms that concerned us. She was breathing incredibly fast and seemed to be tired all the time. She also was sweating while she ate and her feedings became really short and she seemed to not tolerate them for as long. He thought that she was fine and recommended we tell her doctors up at Primary’s when we returned. I was worried that the tumor had spread to her lungs due to these symptoms.
A week before we had her MRI, we went to the mountains for a day trip. Ellie immediately went lethargic and started to vomit. This greatly concerned us and we drove straight to the doctors. By the time we got there, her symptoms seemed to lessen. Once again, they didn’t seem too concerned. When we returned to Salt Lake, she again seemed to be lethargic and started to vomit. They did not want to do the MRI without General Anesthesia. So we met with our ENT the next day. He was greatly concerned with her rapid breathing and ordered a chest x-ray. What we found, changed our lives forever. Her heart was so large that is touched her left rib cage. We immediately saw a cardiologist. She was so fearful of her health that she wanted to examine her before she told us what was found. Ellie had a coarchtation of the aorta with a bicuspid aortic valve. A CHD that normally is fixed with surgery and can be fine without medications. Because it had gone so long, she developed severe cardiomyopathy, a leaking mitral valve, and an enlarged liver. She was immediately admitted to the PICU. That day a few doctors doubted that she would make it through the night. She did. and then the next and the next. Many test were done to see if all her other organs were in multiple organ failure. We were relieved to get the results that just her liver showed organ failure along with her heart. Her BNP levels were above 4000, which is extreme heart failure.
Two days later, they attempted to fix the coarch and because of her heart failure, the anesthesia stopped her heart. They aborted the surgery and went to the cath lab instead to do a stint. We were told by the surgeon that he did not think she would survive. She came out of it fine but developed a aneurysm in the aorta. She spent three more weeks in the hospital till they thought she was safe enough to go home. Eight weeks after her stint, she started to go down hill again and they felt that the time was right to do the coarch repair. This time her heart held up and she was released a week later after major heart surgery. She currently is on three medications a day to keep her heart going. We are living day by day to see if her heart can repair itself. Recently her injection fraction went from seventeen percent to nineteen percent and then a bigger jump after that. This is really promising since her December scan showed her heart getting worse. We were told then, that it was time to get a heart transplant. The next morning, our cardiologist called to say that her left ventricle showed some signs of shrinkage from a scan a few months previous but was not noticed from month to month.
Our current situation with Ellie is a waiting game for the tumor and her heart. She is not eligible for a transplant, until her tumor goes away and she is cancer free for a year. And her heart, as long as it continues to show improvement, won’t need a transplant unless she shows signs of diminished function. I can't tell you how grateful we are for our little girl and the life lessons she taught us. I hope Ellie's story gives other doctors and parents more awareness of CHD. We had no idea that her symptoms were screaming out. We saw many miracles during this past year. We feel very grateful that her life has been spared so far. I want to scream it from the rooftops to get awareness out there about CHD. We almost lost our daughter on several occasions and I don’t want one more person to go through what we went through. We have made many friends with heart moms that we have leaned on to help us survive. And have mourned those who lost their battle with CHD. With out her cancer diagnosis we may have lost our little girl to a broken heart. We still have a long road ahead of us, and hopefully the tumor will continue to behave itself, but we are so grateful for each day that we have been given with our little Ellie.