River, born 2016
Shortly after her two month check up our daughter, River, started showing signs of severe reflux. Two days later we took her in to get that checked out, her pediatrician prescribed meds for reflux and told us that she should be better in a day or two. After taking the medication she didn’t really show any signs of improvement. I was able to get her to take two feedings that evening but it took a lot of effort. That night I woke several times to my girlfriend trying to feed her, it sounded like it was going well so I went to work the next morning feeling like the situation had improved. After getting off work I called home before heading to an evening appointment and was told the advice nurse had advised us to go straight to the ER and she was heading out the door.
We were able to be seen remarkably fast in the ER, they at first thought it could be some sort of pre-viral infection and did a nose swab. They initially didn’t notice anything severely wrong other then being dehydrated from not eating for a whole day. We pushed for them to watch her eat and River started eating fine. The resident doctor thought maybe it could be a case of ER healing and left to go check on other patients. After she was done feeding the nurse however noticed she had labored breathing and went and brought the doctor back. Next thing I know they were ordering x-rays which led to them discovering her heart took up 2/3 of her chest cavity.
By the end of the night they had 3 cardiologists in the room doing an Echocardiogram. One of them said he had an idea what it was but needed more tests. We were admitted and within the following 12 hours she had more Echocardiograms, EKGs and a CT scan. We were informed she had an anomalous left coronary artery and was going to need surgery to correct the issue. We met with the surgeons that afternoon. The lead surgeon said he had only ever operated on 20 cases in his career and each one was so unique he wasn’t able to give any odds of success. We were told there was a very high likelihood of her having to be on ECMO for a few days after surgery and the anesthesiologist was very concerned about the condition of her heart and the meds they would need to sedate her.
They operated on October 13th, about 30 hours after being admitted. Both our families and several friends came to be with us during the surgery, one of the operating room nurses called every hour with an updated. They ordered the ECMO machine toward the end and her cardiologist came out and said everything went well and she ended up not needing ECMO. The procedure called for a delayed closure which they said would be about 3 days after surgery but she was able to be closed up the next day.
Over the next few days tubes and machines slowly started to disappear and we were able to hold her again. The doctors and nurses were continuously impressed with her recovery rate. Every echo and labs showed slight improvement. After 12 days we were able to leave the PICU and were placed in the general population of the hospital. Over the next week River transitioned back to eating on her own again and taking all her medications orally. She was able to go home on 10/31 without any tubes! The doctors say the road to recovery will be long and it could be years for her heart to get to some sort of normality but so far everything is on the right track.
Story by River’s dad, William - Oregon