Camilla Isabella’s Story
“She was so beautiful. My beautiful Camilla Isabella, my daughter, my warrior.”
Camilla Isabella Patino, Trisomy 18, 3/5/2014 to 3/20/2014, Sun Valley, CA
The moment I found out I was pregnant, I knew that God was blessing us by sending us a gift that was going to complete our family. She was going to fill our family with joy, reunite us and help us refocus on what the most important things in life are, our family, our health, our faith and each other. My pregnancy with Camilla had not been planned, at least not at that moment. My marriage was going through a rough period and I wasn’t sure it was the right time to get pregnant. I knew God was giving us another chance by giving us the gift of life, hope, and eternal love. After two painful miscarriages, he had given us two healthy and handsome boys, Daniel and Samuel.
The news was even greater when we found out we were going to have a baby girl. I knew right away that she was going to be my partner, my precious jewel. I knew that she was going to be everything I ever wanted to be, a strong Latina woman, a leader with a heart of gold, and the beauty of a flower.
At twenty 22 weeks I went in for an ultra-sound. The technician was very nice and friendly. She was very chatty and asked me a lot of questions, at least at the beginning. I knew something was wrong as soon as she stopped talking and didn’t want me to talk. She stepped out and went to get the doctor. Right away, I felt a knot in my throat and a very familiar fear crept through my entire body. Although, I had two boys, this was my fifth pregnancy. I had already received the worst news a mother could ever receive. It had been during a scheduled ultrasound at my third month of my first pregnancy that I saw that same look. The doctor could not find a heart beat. I lost my first baby. I had to have a D and C. It was very painful and I could never forget the look the doctor had before he gave me the horrible news. A year after I lost another baby at almost four months. Those two losses had left a deep wound in my heart. I was very familiar with that type of silence and look of panic in a doctor’s eyes.
The doctor was very quiet as he moved the sonogram back and forth. He then, looked at me and told me that there were a few abnormalities in my baby’s heart and spots in her brain. He was going to send me to a pediatric cardiologist at Children’s Hospital and refer me to the UC Maternal and Fetal Institute for a second opinion. I felt a deep pain in my heart. I was very scared and felt overwhelmed. We were scheduled for several tests on a weekly basis, ultrasounds, MRI’s, blood tests, appointments with geneticists. I never received a clear answer but only vague answers of what might be wrong with my daughter. In my heart I hoped they were wrong and they were just being extra cautious. I prayed day and night that my baby girl would be ok.
At twenty-five weeks I started having contractions and was admitted to the hospital. I received three shots of Terbutaline and another of steroids to strengthen the baby’s lungs in case I had to deliver. The shots would work for a bit and then they would start again, so the doctor decided to put me on magnesium. It was extremely painful. On the fourth day I was released on full bed rest. At twenty-seven weeks, I got the flu and started having contractions again. I was readmitted and released the next day. Then again at twenty-nine weeks I started leaking amniotic fluid. I went back to the hospital and was told that I was not going to leave the hospital until I delivered my baby. They were going to do everything possible to keep me from delivering so early, at least not until they felt the baby had better chances of surviving. I was in constant pain with contractions, magnesium that burned through my veins, an IV that was changed every 72 hours, blood withdrawals every six hours, injected with steroids to strengthen the baby’s lungs, pain medication, all sorts of monitors and wires around me. I went days without eating, then having only liquids. My nurses struggled with the IV since my arms had suffered a toll from all the poking. I had polyhydramnios and was in constant pain from the excessive liquid. My doctor scheduled an amniotic fluid reduction with the hope of prolonging my pregnancy, which was extremely painful. I had three liters of amniotic fluid taken out.
Yet, the worst pain was not the physical but the uncertainty of not knowing, the possibilities of her health being in jeopardy. There wasn’t anything I wouldn’t have done for her. My mother, seeing me in pain insisted I ask for a c-section. I couldn’t do it. I couldn’t take any risks and I knew that the best thing for her was to keep her inside me as long as possible. At thirty-three weeks I went into delivery. Since I had been in constant pain, I was unable to know when I was really going to labor, before I knew it was being taken to the operating room and did not have the option of an epidural. I tried calling my husband but it was too late. I delivered my daughter all alone.
My heart ached in desperation, as I didn’t hear my baby’s cry. Then a few moments later, I heard a very soft cry. She was taken away from me without having the opportunity to see her. I felt robbed of my special moment with my daughter. I was taken to recovery where I saw other women with their healthy babies. It was AshWednesday and a nun came in, prayed with me, and made the sign of the cross in my forehead with ashes. My husband then walked in and was directed to be with Camilla. About an hour later, the ambulance team brought her to me before they took her to Children’s Hospital. I didn’t even get a chance to hold her. I was devastated to see her leave and felt helpless as I lay in a bed.
I talked to my doctor. I begged her to release me. I needed to be with my daughter. Although, I had had complications delivering the placenta and was very week, she understood me and asked that I be able to take a few steps before discharging me. That same day my husband called me and told me that Camilla had to go through surgery right away. Her esophagus was not connected to her stomach and was she was choking as secretions were going straight to her lungs. There was no time to think about it. She went under surgery and was able to get out of it successfully. The next day the doctor released me and I went to be with my daughter.
As my husband pushed me in a wheelchair across the hospital I prayed. I was so nervous and scared. I prayed real hard that I would find her in good health. As I got near, I could already see all the wires and monitors around her. She was so beautiful. My beautiful Camilla Isabella, my daughter, my warrior. I thought if she had made it this far and had already undergone surgery, she was going to make it through. Moments later her doctor came in to talk to us. I recognized the look in his eyes and my heart ached and cried inside because I sensed the news was not good before he even opened his mouth. The news was worse than what I could have ever expected. My daughter had trisomy 18, which is incompatible with life. They were going to do another test just in case but they didn’t give us much hope. I saw her and all I saw was my beautiful baby girl. At less than three pounds, she was alert. Everything was in place, every little finger, her facial features, her arms, legs. How could it be? Why her? Why my daughter?
The next day the doctor came back and gave us the same results. It was all so surreal. Never in my worst nightmares could I have ever imagined that I would be given that diagnosis. I had prayed so hard. I yelled inside me. How could God do this to me, to my family, to my daughter? As days passed, I saw her change and become more alert. She would open her eyes and look straight at me. My husband and I had a meeting with a group of doctors. They told us that all they could offer her was comfort care. We were told that putting her through any surgery to repair the VSD or her esophagus would only put her through pain and they felt it was unethical since it would not safe her life.
She was receiving medication for her VSD. We were told that they were going to remove it in a few days. Although, I clearly understood what they were telling me, my heart couldn’t comprehend. They were doctors after all. Their job was to safe lives, to do everything possible. How could they tell me to accept her fate.
Camilla was beautiful. She was a fighter, a warrior. No matter what the doctors said, she was thriving. She was loved by everyone. The staff at Children’s Hospital was amazed at how many visitors she had. She had touched many lives. She soon started to drink breast milk, she started to gain weight and her cheeks began to get more color. Robert, one of our nurses even suggested we request to have her retested. She looked good and was reacting positively. With the nurse’s help I was able to carry her a couple of times. It felt so good to feel her close to me.
Soon after we were told that they were going to take her VSD medication and then the ventilator. We decided to baptize and have nilmdts, Now I Lay Me Down to Sleep, a nonprofit organization, take pictures of her. I was hesitant at the beginning. I felt that by doing so, we were accepting the diagnosis. I couldn’t because in my heart, I still hoped that the doctors would come in and say that they had made a mistake and my baby was fine, that she was going to be okay.
We were scared. We were told that anything could happen. Hours passed and a couple of days passed after they took the medication and to everyone’s amazement, she was did great. Her VSD had not been that great after all. The next thing was the ventilator. We were told that she was breathing on her own. The doctor came in one day ready to take it out. My husband was not present. I couldn’t. I called him and begged the doctors to wait another day, I needed my husband by my side. When they finally took it out, she also did great. She was indeed able to breath on her own. I thanked god from the bottom of my heart and a new hope grew in me. Perhaps, she was going to make it after all. My husband suggested I go home for a few hours and be with my boys who also needed me. I did, although I did not feel comfortable leaving her. A couple of hours later, I received a call from my sisters and sister in law, Toni. They were all crying and told me that she was leaving us, to go quickly. I have relived that day in my head so many times. My brother took me and I tried calling my husband since he had gone in to work. As I ran through the halls to get to my daughter, I prayed to god not to take her. When I arrived she was doing better. I was told that she had stopped breathing for a while and had changed color and had pooped constantly. My sisters and sister-in-laws were all crying. My husband arrived shortly and we decided not to leave the room that night.
As everyone left, Camilla’s vitals kept going down. She would stop breathing, her heartbeat would drop and she would poop and then regain consciousness again. The doctor came in and said we were losing her. I just sat there looking at the monitor in disbelief. I couldn’t bear to see my little girl in pain. Finally, the doctor came and turned the monitors off. He said it was better for us. I was able to carry her and as my husband and I talked to her, the lights turned on in the room and just like that she passed away. We held her for hours. She looked like an angel. She was at peace. We felt God’s presence, right in that room when the lights had turned on. We walked out of that hospital hand in hand. I don’t know how we did it. My legs felt wobbly, I felt a deep pain in my entire body.
It’s been a year since her passing. There is not a day I don’t think about her and wished she were with us. My daughter was born on March 5, 2014, on AshWednesday and passed March 20th, 2014, the first day of spring. I know god does not make mistakes. She came to us to for a reason. She was a gift from heaven. Spring will come again and I will see her all around me, wherever I see life, flowers bloom, birds sing, wherever I see beauty. That is where she will be. That is what she represents, life. She was also born in Trisomy Awareness month. What an irony. It’s been a very difficult year for me, this month in particular. And although I try to be what I wished my daughter to be, it is extremely difficult, for she lives within me.
I LOVE you my precious angel!!! If I could do it again to have you and hold you for just a moment, I would.