My name is Priscilla Martinez and I am Camila Grace’s mommy. Here is our story. A year after experiencing a miscarriage in April of 2018, I found out I was pregnant with my rainbow baby on February 20, 2019. The joy I felt was overwhelming but the fear was overbearing. The thought of going through the same thing again was terrifying but I was ready to take on anything that was handed to me. Little did I know, everything I was afraid of became my reality in an instant during our AFP screening/ultrasound. It was exactly a year to the day; April 24, 2019, that I was told there was something wrong with my unborn baby. I remember that day as if it was just yesterday. I remember praying to God that my baby’s heart was beating at the ultrasound. I just wanted to hear a heartbeat. I asked the ultrasound tech if my baby was okay and she said your baby’s heart is beating! I cried tears of joy knowing everything was going great so far.
It wasn’t until she asked me to wait in the reception area to speak to my doctor that I knew something wasn’t right. My doctor explained to me that the nuchal fold on my baby’s neck indicated there is something seriously wrong and it could either be Down Syndrome or a CHD. We did the NIPT genetic testing for Down Syndrome and it came back negative and they let me know I was having a girl! Because this test was negative, I was then referred to a prenatal cardiologist for a fetal echocardiogram on July 2, 2019. That was the day Camila was diagnosed prenatally with Tricuspid Atresia with VSD.
The cardiologist said “it’s nothing that can’t be fixed with a couple of surgeries”. It didn’t sink in until I got in the car and I asked my husband “did he just say our daughter needs multiple open heart surgeries?”. He was so nonchalant as if it wasn’t a big deal. Her heartbeat sounded perfect to me! How could there be something wrong with her heart!? That is when I began having my weekly appointments at Children’s Hospital Los Angeles and Hollywood Presbyterian to monitor my beautiful girl closely. Everything was going as planned until my 37th week of pregnancy when they noticed Camila had stopped growing in utero and I was rushed to Hollywood Presbyterian for an emergency c-section.I was so scared and my anxiety was setting in quickly. I knew that my baby girl was safe inside my womb and not knowing what would happen after her birth terrified me.
My beautiful Camila Grace was born on October 15, 2019 at 2:33pm weighing only 4lbs 8oz. She was immediately transferred to Children’s Hospital and I was taken to recovery. I spent 4 days alone in the hospital without seeing my baby and I was so mad at myself for not being able to leave sooner. It was torture to see families visiting the other new mommies and their healthy babies next door while my baby was taken to the CTICU.
Once I was finally discharged, I went straight to see my daughter and it was love at first sight! She was so tiny and I couldn’t believe how beautiful she was! Two weeks passed by and we were in the NICCU at this point and her big brother got to meet her for the very first time. When it was time for him to leave, we cried together because he told me he didn’t want to leave his sister there. When I got back up to her room, she began desaturating and required oxygen. Her sats dropped to the 40’s when they needed to be at 75%. She was bagged and she still wasn’t coming back up so they decided to intubate her.
I thought my baby was going to die that night. The intubation process was so stressful for the healthcare team because she had a narrow airway so the intubation process didn’t go smoothly. Anesthesia had to come down to the unit to intubate her which was a success after an hour. On Halloween, the pediatric cardiologist came into our room and explained to me that Camila would need to go into surgery the following morning to place a PA band and stent into her heart to help her body oxygenate better. This was so much to take in but I knew it could potentially save her life. I had meetings with doctors throughout my pregnancy “preparing” me for this but there is nothing in this world that could prepare me enough for something like this!
November 1,2019 at 10am, Camila was taken to the 2nd floor to have her very first open-heart surgery. The next 6 hours were complete hell for me. The fear of having a doctor come in and say she didn’t make it haunted me. Dr. Herrington finally came in after 6 long hours and said “she did beautifully and everything looks great. We even got to close her chest back up!”. Once I was finally able to see her in the CTICU, I thought I was going to faint. I felt so sick and I broke down because of the condition she was in. Imagine seeing your newborn baby connected to all these IV’s, with chest tubes, med lines and bandages down her little chest! I thought to myself; “how can such a tiny baby go through all of this and still be here?” That was the moment I knew my baby girl was going to put up her best fight and I needed to do the same.
Five months passed us by and Camila was still intubated with no signs that she would be extubated any time soon so she got a tracheostomy on March 4th,2020 but because she was intubated for 5 months, she developed an infection in her breathing tube and this was an opportunistic bacteria so if she would get a cold for example, this bacteria would attack her body. We were so close to bringing her home. Her father and I were taking classes for her g-tube and trach ties/changes.
On April 11th, I got to the hospital and her nurse told me they took her off her last med and we will discuss going to the 5th floor to prepare for her to finally come home. After 6 long months, we finally reached our goal! Literally 5 minutes later my baby girl started dropping in her sats and went all the way down to the 20’s. How could this happen? She was just sitting up in her chair and was fine! That darn infection she got from her breathing tube came back and made her extremely ill.
The next day, her kidneys were failing and she required maximum support in terms of oxygen. It wasn’t until the 17th that a family meeting was scheduled and that was when we heard the heartbreaking words “there’s nothing else we can do for her and we suggest that if her heart stops, we should not take action”. The Palliative Care team came to our room and explained to us what we needed to do to keep her comfortable until she passes. That was the hardest conversation because I kept saying that she would get through this like she did before! I can honestly say that having a sick baby during a pandemic is hard but being told your baby is dying and you can’t have family there for support is just as hard.
That weekend, her father and I both got to stay in her room and soak up all the time we could together. We had her baptized on that Saturday the 18th and we finally put a cute little dress on her. That whole night, her sats were in the 90’s so I was filled with hope that she was going to make it through. That Sunday, her father and I felt like it was safe for us to go to our room next door at Ronald Mcdonald house and shower. When we got back at 6pm, she looked different. We knew that it was her time and we had to say our final goodbyes to our sweet girl. I remember holding her in my arms and I told her over and over again how much I loved her and how proud I was of her. She fought so hard and her body was just tired.
I prayed over her and asked God to take her in His loving arms and keep her beside Him for all eternity. She didn’t want to let go. I know she wanted to stay with me. Her heart rate had already dropped to 13 and it went back up to 17 as if she was still trying to fight and I told her that it was okay to go to Heaven and she can finally rest and be free from that hospital. I assured her that mommy would be okay down here. On April 19th,2020 at 10:10pm, Camila Grace took her last breath in my arms. Once she was disconnected from the ventilator, I was able to hold her to my chest for the very first time. Her lifeless body. I always dreamed of the day we would leave that place but never in a million years did I think I’d leave without my baby. She was a warrior and always will be in my book!
Fast forward to today, we are expecting our rainbow baby! Camila sent a brand new little angel to us and gave us a reason to be happy during the holidays. I miss her like crazy but I know God has given her back to me through this baby and I couldn’t feel anymore blessed!
I love you Camila Grace Ortiz (Babygirl Martinez)!
“You are my sunshine”