Featured cherub of the week is CDH survivor Zen. Zen is the daughter of our CDH International Phillippines Ambassador, Almira Kate Eugenio. Almira had this to share about her daughter:
“Hi! I’m Almira Kate Eugenio, mom to my very own CDH warrior Zen. I was once an accounting assistant but have been a stay at home parent since the entrance of my warrior. When I received this diagnosis, I know already that our lives will be changed forever. I’m a proud CDH advocate and I’m willing to go mountains to reach families in need of support.
Here’s a trip to my warrior’s journey:
It was on January 31, 2019, when Zen made her not so grand entrance to this world. She came to us as lively as a newborn can be. Little did we know that this beautiful creation will be facing the unknown monster, CDH.
We stayed a few more days in the hospital because I am not yet stable (my BP, hemoglobin and RBC are all on low levels). During that time, Zen is on her usual newborn self. Everything was normal until we were finally being sent home on February 5. Just one last check on Zen then we’re off to go. However, during that pre-discharge check, the pediatrician noticed Zen’s heavy breathing. Right there and then, she was transferred to the hospital’s ICU. Initially, she was diagnosed of Pneumonia. They ran tests to support the diagnosis, but it turned out differently. In her ultrasound and xray reports, they found out that the monster is not Pneumonia but rather Congenital Diaphragmatic Hernia.
When I first heard those words, I was taken aback. I am completely unaware of what this CDH is and so are the doctors where I gave birth. What stuck in my mind was that my daughter needs to undergo a major surgery at her very young age and that she needed to be on life support. What I only wanted is to be home with my kids and be family, but what the Lord has given me is way different. We needed to find and transfer to a hospital with knowledge to CDH and with pediatric surgeons. Being in a third world country with minimal knowledge and experience with a diagnosis that big, saying we’re scared is an understatement.
On February 14, Zen went through the first dilemma, intubation and life support. Right after intubation, we were transported to the National Children’s Hospital, one of the leading pediatric facilities here in the Philippines. Fortunate enough, they agreed to take us in and promised that they will do everything they can to save my daughter. On February 18, after so many attempts on preparing Zen’s little body for operation, she finally had her repair surgery. That 6 hour wait outside of the operation room was for me, the longest hours of my life. Thank God, she made it through the operation without any complications. We waited for her body to recover from the operation and gave her every care possible to be able to go home.
On April 4, after spending couple of months in the hospital, we were finally sent home. We are very proud of Zen because she graduated NICU with flying colors, no meds, no IVS, no oxygen, just our warrior going home with us.
But CDH won’t let her pass that fast, it tagged along its friends and they all landed up on Zen’s tiny body. After 2 months of being home, we had our monthly check up and monitoring. On that day, to our surprise, her pediatric pulmonologist decided to take her in because she started to have cough again. At first, we were only there to further check and monitor on Zen but after 4 days of being admitted, she was once again intubated. Mild Pulmonary Hypertension, Hypoplastic Right Lung, Right Lung Atelectasis, Low Grade Gastroesophageal Reflux Disease were among the reasons Zen is having a hard time again. On this admission, Zen coded and I must say, that is the most painful experience I have been to. Seeing your daughter being revived in front of you and all you can do is cry was dreadful. That moment, I’m sure I have spoken my sincerest prayer to the Lord and told Him this, “You have given her to us, please don’t take her away this soon. Please allow us to look after Your beautiful creation and please let her be a living testimony of Your power.” And after the attempt of bringing her back to life, He answered my prayer. July 12, we were bound home once again.
We did everything to keep Zen safe and free from anything but I think it was not enough. July 27, after just 2 weeks of being home, she started to cough persistently again. This time, it was worse. She was having a really bad time. Her skin turns pale when she cries and her lips turns almost black. We took her in immediately and right in the emergency room, she was once again intubated. This time, her admission diagnosis was Acute Respiratory Failure secondary to Pediatric Acquired Pneumonia. After several days of giving Zen the medication that she needs, they are sending us home again. This time, August 12, we get to bring her home with 24/7 oxygen supplementation, 5 maintenance medicines, chest physiotherapy and 2 nebulizations medicines.
After a month of being away from the hospital, she was once again readmitted. She caught cough and colds and without further discussions we took her to the hospital September 26. She once again caught Pneumonia. Her tiny lungs are really having a hard time coping up with the natural carriers around her. Thankfully, we caught it early because it avoided a lot more complications.
She’s still on oxygen support and on 5 maintenance medicines. We’re not rushing things up because we know that these babies have their own timing for everything. We believe in her and we know that we will wean this treatments overtime.
We really are trying our best to provide Zen with the best possible home care. I’m hoping it works this time and I think it does work because I see no signs of CDH anywhere. I pray it stays this way. It has been a roller coaster ride for us but never will I regret going on this journey with my warrior.
This whole CDH journey has showed me a different perspective of parenting. It has opened up my mind to many possibilities and what ifs. I was fortunate because I was able to find support from a lot of people and organizations and I’m looking forward to being the support that someone might need someday. To follow her journey, please visit https://www.facebook.com/ZenVersusCDH.”
