Warning: This episode talks about infant loss. If you have experienced infant and/or pregnancy loss, please proceed with caution.
In this very special episode, my friend Maria (the winner of my giveaway!) shares her story with us about her beautiful daughter, Camila.
Maria “Eva” Itriago Rivera is a 25 year old woman from Venezuela (South America) currently living in Southwest Kansas Area. She is a Licensed Nursing Assistant, CPR Instructor and Spanish Interpreter with personal and professional experience on the medical field. Eva is a wife to Reinaldo who is a hard-working and loving man, mother to Camila who went to heaven on 5/9/2019 due to a CHD and Di George’s Syndrome and Aurora who is expected to arrive on November 2020. She enjoys singing, working out, spending time with her family and going to church. Since 06/19 she is working for a non for profit organization in Kansas as an Administrative Assistant and Spanish interpreter, helping families receive free early intervention services for children 0-3 years old that have a delay or a disability. This organization also helps mothers who are pregnant get education about their pregnancy, lactation consultation, and connecting them with the community resources available to help them meet their needs.
Eva is passionate about helping others, as the only child of a single mother she grew up facing many challenges, but at the same time her mother was a role model for her, a true example of how to be unstoppable. The many struggles she has faced in her short life have made her understand that regardless of your current situation, you always need to “Fight to Flourish – Jennie Lusko”.
Maria’s Birth Story:
December 2018 was the due date for the birth of my firstborn daughter “Camila”. My belly was enormous to use a more graceful term. At 35-weeks my doctor found out I had high levels of amniotic fluid, per ultrasound report: severe polyhydramnios. The doctor checked me out, but he did not understand the cause because I was “healthy”. At 39 weeks on 12/07 I had a scheduled C-section early in the morning, I was taken to the OR for the surgery, and I was very scared and excited about the birth of Camila. My anesthesiologist placed the epidural but it did not numb my body, and then they put me to sleep immediately after that under general anesthesia. Little did I know what was waiting for me.
When I woke up from the C-Section there wasn’t anyone around me, and I immediately knew that something was wrong. I just wanted to hold my baby, but instead my husband got into the room with a face that told me something was wrong. He told me that my baby was having trouble breathing and she needed to be flown out in an emergency flight to a bigger hospital 3 hours away from us. I was so confused, panicked, hurt, I felt that the weight of the world was over my body and I just wanted to really wake up. With the strength I had left I stand up, got into a wheel chair and kissed my baby good bye at the NICU, with no guarantees she would survive the flight. That moment broke my heart forever, my expectations and dreams of the birth of my daughter, and to this day this moment hunts before I go to bed. The nurses wanted me to pump, but I had no energy knowing that my baby was away from me and I was still hospitalized, and couldn’t go with her. She made it safely to the other Hospital, and a few hours later my cellphone ringed with the worst news: Camila has a severe heart problem that we cannot fix here in Kansas, she needs to go now to Colorado. I think my own heart skipped a beat after that call, and after that call our lives and my expectations of motherhood changed forever.
At 1 day old Camila had to be taken in an emergency flight from Kansas to Colorado (her second medical flight in a little over 24hrs). I asked the doctor permission to take a flight to Denver after I was discharged (4 days after my C-section). That flight was the worst nightmare of my life, I was going to pass out from the bleeding, nausea, anemia, pain and panic. I made it to Aurora, CO with my family and checked-in at the Ronald McDonalds House. Upon arrival at the hospital, I was desperate to be with my baby girl.
When I got into that CICU room, she was peacefully sleeping and I just feel like I heard: “mama I was waiting for you” in my inside, that connection… I cannot explain. That same day I ended up in the ER with a very high blood pressure and unstable but I was able to be discharged at night. The next day I went back to the CICU to hold her for the first time and be with her every second, and that same day the doctors gave us the worst news of our lives. Your daughter has: Tetralogy of Fallot with Pulmonary Atresia and MAPCAS, and this diagnosis usually has a base genetic disorder called Di George’s Syndrome or 22q11.2 Deletion Syndrome which she is tested positive for 3 weeks after the blood sample was taken…. That day my life was turned upside down.
With these news my husband and I decided that we were not going to give into sadness but that we were going to give her the best life we could, give her the best of the best from our hearts and advocate like no other, after all, I knew God had prepared me for this moment
She went through a lot: X-Rays, CTs, PICC line, 3 Hearth Catheterizations, 1 failed G-J tube Surgery, NG tubes, 1 Nissen Surgery with G-tube (which I had to advocate for and propose to the medical board since they did not know what to do with her, I had another momma help me find out about this option for her on Instagram). She was intubated multiple times, had CPAP, high flow, nasal cannula, breathing treatments …lots of labs, meds, monitors.
I knew God had not sent me to this battle without preparing me, since I had worked with every department at the rural Hospital where I gave birth (I got to learn from amazing healthcare professionals) I knew how to help her most of the time, I would provide direct care for her, even during the most critical times. She needed a 20-hour open heart and lung surgery to be able to have some chance at life, and on May 9th, 2019 at 9:00pm while I went to RMH for dinner she went into Cardiac and Respiratory arrest after getting upset while having her RT treatment.
I arrived in the middle of the episode, she did not respond to epinephrine or any other meds used for resuscitation, neither CPR. She was 3 days away from her heart surgery and 2 days away from our first mother’s day together. While watching the team trying to bring her back to life, I felt an unexplainable weight in my chest, I knew in my heart it was her time, because we knew there was nothing else with could do, it was her time to go to heaven, we fought a hard battle but the decision of her life in earth unfortunately was not ours.
I held her lifeless and surprisingly weightless body one last time that night.
We spent 5 months in the Cardiac ICU with her. I must say she had everything she needed: best medical care, us as her parents by her side at all times, her grandparents got to meet her and serve her as well, and she had 2 baby showers and had tons of things, which I took as much as I could to her hospital room so she could feel at home. After her passing all these items were sent to Venezuela for the children and moms in need, and some others were donated to Ronald McDonalds House.
She never made it home, she never made it out of the hospital but she stayed forever in our hearts and minds. She changed us forever. Now I understand that her spirit was so strong, so big that her earthly and broken body could not hold. Never forgotten, always loved … My Dear Camila mommy and Daddy Love You.
You can find Maria on social media here:
Resources from the episode:
For more support with Di George’s Syndrome (22q11.2 Deletion Syndrome)
For Free Early Intervention Services and Pregnancy Support in Southwest Kansas Area:
Russell Child Development Center
FB: RUSSELL CHILD DEVELOPMENT CENTER
Books for Grieving Families:
“The Fight to Flourish” by Jennie Lusko
“It was not supposed to be this way” by Lisa TerKeurst
“Be the One to Heal Yourself” by Beth Rogerson, PhD