HEART HERO SALEM & LUCI

Heart Hero of the Month September 2021

Story by, Kallie

Salem and Luci were born healthy on October 22nd, 2019 and we brought them home 3 days later to their big sister, Mavis. We had completed our family of 5 and we were excited to start an amazing life with our 3 beautiful daughters. 

Salem and Luci had no health concerns when they were born other than being a month early, but in early December 2019, we discovered that Salem was not making noise when she was crying. We took both girls to the children’s hospital in Littleton CO and the doctors and staff quickly found out how much danger the girls were in after checking their oxygen levels. Salem and Luci were both in desperate need of oxygen. Doctors initially thought they caught RSV and informed us that they didn’t have the equipment to care for them at that facility so they called for two ambulances to come to get the girls and bring them to children’s hospital aurora. Before the paramedics arrived Salem stopped breathing on her own and needed to be put on the CPAP machine. Salem and Luci were brought to the NICU at the Anschutz campus where they spent a week on the CPAP machines after discovering that they had caught the rhinovirus. Both girls were discharged and Salem, unfortunately, needed to go home on oxygen but doctors believed she would be off the oxygen within a couple of weeks.

After a week of doctor’s appointments almost every day, Salem’s pediatrician said she needed to go back to children’s to get a chest x-ray because her lungs were not clearing up. We were sent to Children’s Hospital Littleton again for the x-ray and after examination, the doctors decided she needed to be admitted and sent for an ambulance to come to get her and bring her back to Children’s Hospital Aurora.  Salem was sent to the NICU again where she was put on the CPAP and the next day they did a chest x-ray that showed her heart was enlarged and they needed to do a CTA scan to determine if it was a structural issue or not. Doctors had to intubate her to do the scan but during intubation Salem flat-lined and needed CPR. They didn’t realize how bad everything really was until they started intubating her. After stabilizing her and getting the scan done they sent her to the CICU where she was put on life-saving medications and was given blood transfusions.

After a couple of days of Salem being in the CICU, we decided to get Luci re-examined because she was not getting better and they discovered her heart was also enlarged. Luci was also sent to the CICU where she was put on lifesaving medications and given blood transfusions. After doing genetic testing we discovered both girls have dilated cardiomyopathy due to 3 genetic mutations that were passed down from me and their dad. (Older sister Mavis doesn’t carry any of the genetic mutations). Salem and Luci were in and out of the CICU and CPCU for a couple of months after their diagnosis and for some time doctors and the staff was preparing us for both girls to be put on the transplant list (Fortunately we have not come to that yet). Other than just their cardiac diagnosis’ the twins have had other medical problems that have come up during this journey, but they have continued to amaze us all and overcome them!

Due to the intubation, Salem has left vocal cord paralysis and was given an NG tube that she had for 9 months until they decided to give her a GTube after she was stable enough to have surgery. Salem has had occupational therapy and physical therapy which she has graduated from. She is still currently in speech therapy but she is eating and drinking mainly by mouth now which she didn’t do for the first year and a half of her life. 
Luci started in occupational therapy but has graduated from that, and was placed in physical therapy, she is still in physical therapy and has recently started speech therapy (for speech not feeding). Luci recently had an MRI showing some brain damage due to either being born premature or due to lack of oxygen to the brain so she might have learning or physical delays later in life. 

Salem and Luci have been stable at home and have only had to go back to the hospital for appointments and the occasional cold or stomach bug that needed monitoring. Both girls are on medications that they will need to take for the rest of their lives but have been able to live fairly “normally”. This journey has been incredibly hard at times but so beautiful and we are lucky to have 3 beautiful lights in our life.

“They endured pain like a warrior and loved like a goddess!” 

-Mom