Natalie was enjoying her summer day like any other 6 year old – swimming, shooting baskets, riding bikes, and jumping on the trampoline. Over the next couple days she began vomiting, lost her appetite, and eventually stopped drinking. We thought she was dehydrated, so we took her to the E.R., where they told us it was something much worse: cancer or heart failure. She was then airlifted to UW Madison without either of us. By the time we arrived in Wisconsin the doctors knew the medicine they had started to improve her heart function was not going to work and she needed a heart transplant. UW Madison was not a big enough hospital to perform the surgery so we had to make a choice as to where to have her transferred, and we chose Children’s Memorial Hospital in Chicago due to the shorter distance to our home. After getting settled in Chicago, Natalie was diagnosed with familial dilated cardiomyopathy which typically doesn’t present until a person’s early 30s, but for some reason, maybe a virus, she presented early. Adding to the already unsettling situation, Chicago had just built a new children’s hospital and all the patients were going to have to be transferred to the new building, Ann and Robert Lurie’s Children Hospital. The transition was smooth and without incident. Three weeks into her stay she underwent the first of two open heart surgeries and had a device called an LVAD put in her chest to essentially perform the work of the heart. One week after that, we got the call and Natalie’s life, as well as her loved ones, was changed forever. On June 27th, 2012, she was successfully heart transplanted. Natalie and her family learned to adjust to this new way of life until 2018 when she became sick again, this time with ectopic atrial tachycardia (EAT), which can be an indicator of the start of CAV. She was treated for the EAT and rejection, even though rejection was unfounded. After spending another summer in the hospital, Natalie battled back. In 2020, life was disrupted, not only by COVID-19 isolation, but also by a not so great looking Echo during her clinic exam. Natalie’s Cardiologist decided he wanted Natalie to get a cardiac cath before being released to go home. What we all thought was going to be a routine procedure on June 9 turned into a living nightmare. After injecting the dye, they saw her left coronary artery was almost completely stenosed, and she needed a stent to open the vessel. During the procedure, things went terribly wrong and she went into cardiac arrest causing them to perform 15 minutes of CPR while getting her hooked up to the ECMO machine, which is a form of life support. During CPR, her liver was lacerated and bleeding into her peritoneal cavity and her lungs had bleeding. The doctors tried to stop the bleeding from the liver by putting something in to plug the source, but were unsuccessful in completely stopping the bleed. Instead of going back in for another procedure they decided to see if her body could do the rest of the repairs itself. After taking some trauma from all the damage and heavy medicines/drugs she needed, her kidneys gave up and Natalie was hooked up to a CRRT (Continuous Renal Replacement Therapy) machine to remove fluid from her swollen body and help filter. All throughout this journey, one thing remained positive –

the CT scan of her brain showed no damage. After a while, Natalie came off of ECMO and CRRT on June 16. Three days later, Natalie suddenly had a fever and the doctors were not 100% sure why, so she was put on several broad spectrum antibiotics and antifungals. In response, her kidney function significantly dropped, so she was put on hemodialysis 4 days/week. In the meantime, the doctors kept lifting the paralytics, so Natalie had been waking up very upset, confused, and delirious, as she should be. Natalie’s kidneys were still making urine even while hooked up to dialysis, so that was a good sign. On June 30, she finally got her breathing tube out. Also, when PT and OT came, they had her standing up, which is another example of how strong a girl she is, and also put her in a wheelchair so she could venture outside of the room. Although her kidneys were still not functioning as well as they should be, her ultrasound on July 8 showed good profusion and no signs of shrinkage, which is a good indicator that her kidneys can recover with time. Also, on that same day, Natalie was re-listed on the heart transplant list as A2 and was not listed as A1 (top priority) until the next day on July 9. For approximately 2 weeks as of July 15, Natalie had been very ?nauseous, which was causing both vomiting and diarrhea, and it was a struggle to figure out the right meds and nutrition to work for her. Things went very south on July 20. Natalie had been very weak suddenly, as in she could not even lift her head, and in pain. Her kidney function decreased causing some acidosis, her lactate, and her liver numbers were also elevated, and they were not sure why. After a CT with contrast was completed and read, the doctors discovered that she had a pneumatosis, which is air in-between her inner and outer wall of her large intestine, and was getting poor perfusion (blood flow) inside the liver. The doctors determined it was caused by her heart not pumping out enough blood due to hypertension she had developed shortly before. Her diastolic number was elevated indicating her heart was not filling well enough. She then had an Echo which confirmed a slight decrease in the function of her heart and resulting in the introduction of some new medicines. As for the pneumatosis in the intestine, the plan is to give her a 7 day antibiotic regimen, not allow any food or drinks, and to recheck KUB x rays to determine if more time is needed or if the treatment can be stopped. The doctors are closely monitoring her IRN and liver enzyme numbers to make sure they are trending in the right direction. Due to these series of setbacks, she has had her status on the transplant list paused and is now listed as a status 7.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.