My daughter, A, was born with a very complex medical history. Most of it wasn't diagnosed until she was 10 months old and took us by complete surprise. When I was pregnant, we knew she had only one functioning kidney which wouldn't affect her quality of life. When she was born, she had a difficult time breathing at birth and had to go to the NICU. It was found that she had 2 small muscular VSDs and her PFO remained open. Nothing required any surgical interventions, and we were told that she could be monitored on an outpatient basis.
We went for a routine ECHO in May and had some questionable abnormalities. We assumed it was because she was she was moving a lot and it was bad imaging, but our cardiologist wanted to be certain. Two weeks later she went for an abdominal ultrasound and was diagnosed with heterotaxy. I had been a nurse for 9 years when A was diagnosed and never heard of it before. I broke down the word and knew it meant "different arrangement". I always think the worst and googled "Heterotaxy life expectancy" and read the worst words imaginable. "Life expectancy in heterotaxy syndrome infants is generally low, with one-year survival estimated at around 15 percent and 50 percent in right- and left-sided syndrome, respectively." I've never been more scared in my life. I couldn't understand how a child who seemed so healthy could have such a terrible diagnosis.
We spent a lot of time at CHP that summer on an outpatient basis. We saw 13 different specialists, and with everyone we saw, a new diagnosis was added to her medical history. Every specialist would want us to be consulted by another specialist and have more testing done. A has heterotaxy with polysplenia, a multicystic dysplastic right kidney, a right-sided hutch diverticulum, intestinal malrotation, a midline liver, left thumb polydactyly, subglottic stenosis, 2 small muscular VSDs, an interrupted IVC with azygous continuation, her hepatic veins dump into her right atrium, she has bilateral bilobed lungs, and her mom's attitude. Looking at her on the outside, it's hard to imagine the complexity that lies on the inside. Her cardiac history sounds bad, but it's very mild compared to other kids with heterotaxy. Thankfully, this gives her a much better prognosis.
A needed to have a Ladd's procedure with an appendectomy. Kids with heterotaxy have very high morbidity and mortality rates, and surgeries make those rates even higher. Her expected two-hour surgery turned into 3.5 hours and all I could do was worry. We finally got to go see her in the PACU and got transferred to 6b. That's when we met A's favorite nurse, Beth. Within seconds I instantly felt like a huge weight was lifted from my shoulders. Beth has a very calming demeanor which is exactly what our family needed. She is immensely knowledgeable, and even more compassionate and kind. She always could get A to crack a smile, and sometimes even get her to laugh, hours after her abdominal surgery. The next day, A drove around the unit in her Little Tikes car and would always wave to Beth. If Beth was busy charting and didn't notice, A would yell so she would look at her. It gave us all a good laugh. The next day A pulled her NG tube out multiple times, and despite Beth being the "bad guy" who had to put it back in, A still loved when she would come into the room. We joked that she pulled it out so many times just so Beth would have to come in more often!
Two months later we came back to have her extra thumb removed. We requested to be on 6b because we loved everyone who took care of us. When we got to the unit, Beth was our nurse again. A remembered her and was so excited to see her (and so were we)! A was smiling, laughing and even showed Beth some of her dance moves. When she would leave the room, A would cry and want her to come back. Beth was such a blessing to our family, and we are so extremely thankful that she took care of our little girl. When people ask us how A's surgeries went, we always bring Beth up when we talk about our hospital stays, and every time we mention her name, it brings a smile to all of our faces. Beth's caring presence, knowledgeable presentation, and availability to us whenever we needed her gave us an anchor for a path to recovery. A blew kisses to her when we got discharged, and that's something that doesn't happen too often. She has touched our lives in a way that cannot be explained and will always have a special place in our hearts.