F Charlie’s Story ~ Eagles Heart and Cancer Telethon PDC

Charlie’s Story

IMG_20160129_174221_829On October 8, 2015, after a few days of abnormal fussiness I took Charles to the walk in clinic in New Ulm, MN, for what I thought was a simple ear infection. No ear infection was found, however it was then discovered that he had a heart murmur. We were instantly sent for an EKG, chest x-ray, and labs. We were then referred to Minneapolis Children's Heart Clinic in Minnesota to see a pediatric cardiologist.

On October 14, 2015, our world was completely changed. We arrived for the appointment and before seeing the Cardiologist Charles received an EKG and an Echocardiogram. When the Cardiologist came into the room he cut right to the chase and said, "Your son has a serious heart defect." Those are words that no parent ever wants to here. He was diagnosed with Mitra I Valve Stenosis, Mitra I Regurgitation, and as a result Pulmonary Hypertension. We were instantly admitted to the Children's Hospital Cardiovascular Intensive Care Unit.

Still in shock we watched as they hooked him up to IVs, heart rate monitors, oxygen monitors, and asked questions we were not prepared to answer. I didn't sleep a wink that night. I stayed up talking to his nurse and learning as much as I could about his defect. The next days were filled with tests, x-rays, blood draws, echos, and more medical language then I could ever have imagined.

On October 21, 2015, Charles underwent his first open heart surgery. The surgery went well and he recovered quicker than expected. His last echo showed moderate regurgitation but was expected to be nothing some diuretics couldn't take care of. On October 30, he was discharged from the Hospital and we made it home in time for Halloween so he could be Mickey along with his big sister Mya as Minnie.

The first couple of weeks were great, his one week follow up looked good. We were optimistic. But the third week home would bring a downhill slide. He slowly stopped eating, stopped eliminating, and began to gag, grunt, and have retractions with breathing. We called up to the hospital on November 22, 2015 and were instructed to bring him to the Emergency Department where they would admit him. A new echocardiogram discovered that his regurgitation had gone from moderate to severe and the repair was not holding. At 2 am on November 23, only 12 hours after being admitted, Charles lungs were filled with fluid and he was crashing quickly. I was told that he would need to be intubated or he wouldn't make it through the night. Dr. Rood saved him that night as she knew exactly what needed to be done and she did not hesitate to do it and do it well. With a machine now working for him he was stable. We would spend Thanksgiving in the hospital as we waited for him to gain some strength and fatten up (via IV fluids) for another surgery. We also needed to wait for his lungs to be stable and for his now distended stomach to go down.

On November 30, 2015, he received his second open heart surgery. It is not ideal to replace an infant's heart valve because it will need to be replaced several times as the child grows, so it is looked to be repaired first. Initially he was opened up and it was attempted to repair again. However when they took him off of bypass and allowed blood to flow through it the echocardiogram still showed regurgitation. He would need to have an artificial valve put in. It is not common to do this in an infant, but this is what Charles needed. His new valve was put in and it made a wonderful clicking sound. Sometimes when it's quiet I can lay by him and hear it, that's how I know it's working. On December 8, he underwent general surgery to have a Broviac line placed from his neck to his chest to allow access to draw blood to check his INR for his Coumadin levels. I was shown how to maintain this line myself and we would receive weekly visits from a home nurse to monitor it and draw his blood. He was discharged on December 16, 2015, just in time for Christmas.

However on January 2, 2016, Charles developed a nasty cough. This cough became bronchitis and croup. Which later on January 4, became pneumonia. Some lab tests were drawn in the local New Ulm Medical Center Oncology department to make sure that nothing more serious was happening. It was found that his hemoglobin was shockingly low. Some follow up iron tests were drawn as well. His Hemoglobin continued to hang in the lower numbers. On January 14, Charles began to breathe heavy and appeared to be retracting. I decided to take him in to the Emergency Room in New Ulm. He again had blood drawn and an x-rav. His x-rav revealed little to no signs of lingering pneumonia, he was however given an IV antibiotic dose to be safe. His blood tests however showed a different story. His hemoglobin had again dropped, this time to the lowest it had been. There was no question that we were going back to Children's in Minneapolis. He was transported via ambulance to be safe, I was allowed to ride along.

When we arrived at Children's we were taken to the ER where they did an EKG and some blood draws and we would wait until we could get a room on the CVCC floor. We were given a room around 11pm, Charles in good spirits the whole time.

IMG_20160129_173349_920The next days would begin to stump the hematologists as every blood test they ran came back normal. He received an echocardiogram that revealed a tiny hole on the side of his mechanical mitral valve. It was determined that this could cause hemolysis (the breaking down and killing of red blood cells) but it was not believe to be the sole source. The next week would leave us hanging around the hospital hooked up to a heparin IV because our Coumadin had been dropped. During this week we awaited blood tests that were sent to Memorial Blood Bank and Mayo for further testing. These would later come back negative.

Upon speaking with the surgeon it was determined that the sole reason for the hemolysis was from the perivalvular leak on the side of his valve. Being its size it would actually cause more hemolysis then a larger leak because blood was being pushed through by pressure. The leak would need to be fixed. However, this was the first time this had happened at Children's and they wanted to know the best way to approach it. Opinions were sought from around the country to find the best approach.

On January 26, 2016, Charles was intubated and taken over to Abbott Northwestern in Minneapolis for a Flash CT in hopes to better pin point the hole. This approach is very useful in adults, it was worth a try to help him, however the reflection of his valve did not give an accurate view. However the echocardiogram was still revealing this small hole and in the 3D view it was obvious enough that the cardiologist felt he could tell the surgeon where he needed to stitch.

On January 27, 2016, at 8:30am anesthesia took him back for his third Open Heart Surgery. At 9:29 they began to open him up. The Cardiologist came in and reported that the surgeon was not able to see the hole (only 1.3 millimeters) but that based on the echo he stitched blindly in the area that they were seeing it. They took him off of bypass and it was still leaking via echo. Charles went back onto bypass and the surgeon probed around inside and found 2 holes, he stitched the two holes up. He was taken off of bypass. The echo still revealed a tiny leak now only about 3/10 of a millimeter. The Cath Lab Cardiologist was brought in to attempt to get a line into the hole. This was unsuccessful as the hole was now very tiny and the line kept curling. It was decided to take one more shot. He was put on bypass for a third time, the Cardiologist could see an area on the echo that showed a longer stitch between the area, the surgeon put in another stitch or two in this place. He was taken off of bypass again. It was GONE! Much to the surgeons disbelief he had found it and it was sealed shut ... a short 6 1/2 hours later, 7 1/2 hours after anesthesia took him back.

12573063_10153898006119570_3970562241212203065_nAs of today, January 28, when I write this Charles is stable. He continues to recover from his surgery yesterday and we are hopeful to extubate him this afternoon and get him to wake up more.

My hope is to be able to take him home this time and keep him home until he needs to have his valve replaced again in 2-7 years. My hope is that by the time he needs a new valve there have been advancements in technology that make it last longer and require less medications. While I walk these hospital halls, this time, like every time I am reminded of the beauties of technology and research that make it possible for all of these children to be here today.

According to the Centers for Disease Control and Prevention, Congenital Heart Defects affect nearly 1% of births in the United States. About 25% of these babies need surgery in their first year of life. Congenital Heart Defects are a leading cause of birth defect- associated illness and death. 4.2% of all neonatal deaths were due to a Congenital Heart Defect.

This is just a piece of our story I encourage you to find us on Caring Bridge and see what truly incredible things we have gone through. I am asking you, as the mother of a cardiac baby to find it in your heart to donate to the Eagles Heart and Cancer Telethon. The money you provide can go towards life changing and saving research. The technology that we have been given today has saved my son. Imagine the possibilities for the future, for his future surgeries, for all cardiac babies and their futures. My family and I sincerely thank you for giving others, like my son a chance to live.

Shelby Tietel,

Cardiac Mama