My name is Scott Friesen, my wife Maria del Carmen (Camu) and I live in Lima, Peru and when our little Sofia was born on April 24th, she was perfect and healthy and we were overflowing with love and amazement. Our wonderful dream turned into a horrible nightmare when she suddenly developed a very severe case of jaundice that put her into the ICU in critical condition when she was just four days old.
Jaundice occurs when there is a buildup of bilirubin in the blood, which is produced from the breakdown of red blood cells. Bilirubin is normal and is usually filtered out of the blood by the liver. What we learned is that because Sofia has a different blood type than her mother, she received antibodies from the placenta, when she was in the womb, that were against her own blood and breaking down her red blood cells too quickly for her young liver to handle. What made it even worse was a strong infection that they discovered in her blood. All of this put her bilirubin level at more than three times the maximum normal rate, which put her at risk of having brain damage. So, they put her into an incubator where she was given blood transfusions and she also received phototherapy for five days, which exposes her whole body to strong lights 24 hours a day in order to help reduce the bilirubin in her blood. She was also given a strong antibiotic for several days to treat her infection.
On top of that, they discovered that Sofia also has a congenital heart defect called Ventricular Septal Defect, which is a hole between the left and the right sides of her lower heart. This is also causing a condition called Pulmonary Hypertension, which is high blood pressure in the arteries of the lungs. This prevents her from absorbing enough oxygen when she breathes, so she needs to be given oxygen. The cardiologist has told us that she will need to have surgery on her heart to close the hole. Unfortunately, this can’t happen right away because she isn’t strong enough. He said that if they performed the surgery now there would be an 80 percent chance that she wouldn’t survive, so we have to wait until she’s stronger, but if they wait too long, the problem with her lungs could also be fatal. So she will have to have surgery in less than a year.
A big concern for us is that she’s almost a month old and she hasn’t gained any weight because of her heart, in fact, she’s lost weight since she was born. She needs to gain weight and get stronger for her to have surgery on her heart but it’s her heart problem that’s keeping her from gaining weight. So it’s pretty tricky.
Sofia is a fighter, she’s still in the ICU receiving oxygen to help her breathe and she's being given rehabilitation to help her drink milk on her own again. Right now most of the milk she gets is fed through a tube. Her muscles are still very weak so she will need rehabilitation to exercise her muscles and to stimulate her brain because her body has been through a lot of trauma. When she does come home, which could be in a week or two or three, we would have to take her to therapy twice a week to continue teaching her how to eat on her own.
For us, the last few weeks have felt like months. We are exhausted from all the emotions and the daily trips to the hospital on top of all our normal everyday work and tasks but we are trying to be strong and positive for our little Sofia and take it one day at a time.
Unfortunately, here in Peru, good healthcare is super expensive and because of the pandemic, health insurance has become so expensive that we were unable to afford it. Sofia's stay in the ICU and the treatments and all the specialists that have been attending to her have put us in a very troubling financial situation. We’ve spent all of our savings, and we’ve maxed out our credit cards in order to pay for everything. That’s why we've started this fundraiser.
The money we receive from this fundraiser will be used to pay for her stay in the ICU and all the tests and treatments and specialist evaluations she’s had and will continue to have until she’s discharged. This will allow to be able to manage all the future treatments and therapy that she will need moving forward. We want to say thank you so much to anyone who is willing to donate, we will be forever grateful to you. Of course, we understand that not everyone is able to give but if you would at least be willing to share our fundraiser with anyone you know who might be willing to donate, that would help us a lot.
Thank you from the bottom of our hearts.
