“Incompatible with life”? I don’t think so.”
Eve Luciana Cagna, Trisomy 13, 2/28/2012 – 2/29/2012, Newburgh, NY
“She is incompatible with life”. I will never forget that phrase spoken to me two years ago by the specialist who was monitoring my twins. You see, that day was supposed to be when I found out the genders of my babies, and I was so excited. Up until that point the road had been filled with so many tears and heartaches with needles and hormones and procedures. In Vitro Fertilization was never the way I imagined conceiving a child. It seemed so clinical and cold, but directed by God, we obeyed and I underwent the most painful and challenging year of my entire life. Yet, once conception began, I felt like every other mother growing a miracle, two miracles in fact. I was praying that two would take, and God honored my request. Twins. I was over the moon.
Fast forward to the moment of the ultrasound when I found out I was having a boy and a girl. I wondered why the tech did not smile at my little jokes and squeals of excitement. I wondered why she had to quickly excuse herself to retrieve the pre-natal specialist. As I stared at my two growing miracles, I wondered why my son’s features were so clear, while my daughter’s features were almost indistinguishable. My heart began to pound and right before the Specialist came in, a fleeting prayer had time to make itself known, “Please, God, NO”. The specialist looked at me with sad eyes, and told me an amniocenteses test was necessary to determine her condition, because it was clear there was something very wrong. I consented to her test, but not Christian’s, as the specialist told me he looked healthy. From learning the genders of my miracles, I then had to endure another needle to determine my daughter’s condition. It all happened so fast, and within a day or two I was back in the office while the Specialist told me that my daughter, Eve, was “Incompatible with life”. The doctor proceeded her explanation, ” Unfortunately, the fetus has a condition called Trisomy 13. It is the worst case I have ever seen. Most of the time the fetus will not grow past 4 months. I suggest a partial reduction in order to save yourself psychological distress. ” I was astounded., “Partial reduction? By that do you mean abortion? Killing my daughter to save myself the emotional pain? No way. Not only will she stay in my womb, but if she does continue to grow I want her monitored and measured the same way my son will be.” The specialist looked at me stunned, “Mrs. Cagna, I strongly advise against it, your mental stability is at risk.” I looked her straight in the eye, “I believe in giving her a chance. Only God is the giver of life and death, and I became a mother at conception. I have the right to have my daughter monitored.”
I drove home shaking and in tears. I screamed, I cried, I begged. This is not how it was supposed to go. Didn’t we go through enough trying to conceive? Hadn’t we bled enough? What was left? I began to trust that God would heal my little girl, and so with each doctor’s appointment, she was monitored. It was extremely hard to watch as her features morphed, and barely looked human. She had a cleft lip, cleft palate, six fingers and toes on each hand. I didn’t care. I began to have nightmares about giving birth. The stress was painful, but my husband and I relied on God. I sang to my miracles every night, showed love, rubbed them calmly when they fought in the womb because Christian always started the fight. She was on the left side of my womb, and she was happy there. Surely, God would heal her. As my due date became closer I took at as a good sign that Eve continued to grow. She weighed slightly less than her brother, and the specialist was surprised that she continued to grow. One of her abnormalities even disappeared completely. We felt everything was leading to this miracle, until something unexpected occurred.
It was early in the evening and something felt off. I went to the bathroom and realized I was hemorrhaging. I screamed for Chris and told him to give me two iron pills quickly and take me to the ER. I found out later that it was part of what saved my life. I was immediately taken and remember having an emergency C-section. By that point, I lost so much blood, I felt myself fading. I heard the docs yelling, and my husband’s face looked gray. I remember starting to drift when I heard a voice and felt God’s presence, “WAKE UP. You’re not done yet. WAKE UP and FIGHT.” My eyes opened and I felt a surge of electricity flowed through my body. I heard the chatter of the docs as they first took Eve out, “Is she healed?” I asked my husband. He didn’t want to tell me for fear I would give up the fight and let go. He sadly shook his head no. I then heard the hearty cry of my son. Wheeled into recovery they tested my blood count and I had lost half the blood in my body. The doctor’s were surprised I was even conscious. The blood transfusion began, but not before I had a minute to touch Eve’s face in the incubator right before they took her to Westchester Medical an hour away from me. I begged to go, but I was not stable enough, and so I was far away from my baby girl, while fighting for life. Still, I believed that God would heal her. I was convinced.
Almost a day later another prenatal specialist came in and said they found blood in Christian’s stool. Now, he too would be taken to Westchester Medical while I was stuck an hour away from my precious babies. My husband drove back and forth, and I fielded phone calls from Westchester Medical asking me to sign a DNR for Eve, as she was suffering because one of her lungs was not fully developed. I remember the anger and agony of it, “I am sorry but I cannot do that. God is the giver of life and death”. You never realize what kind of faith you have until it is tested.I couldn’t believe this was my first encounter with motherhood. I felt robbed. I begged God, ” PLEASE. If you are not going to heal her than take her home! She is my daughter, PLEASE don’t allow her to suffer any more.”
The next day, my husband walked in with a look on his face. He took the juice out of my hand and placed the hospital bed in the upright position. “Honey”, he said with tears in his eyes, “Eve didn’t make it”. I looked at him in shock. “No”, I said. “Yes, honey”. “NO!” I cried. “He can raise her from the dead, He did it with Lazarus. He said we would do greater things in His name, right?”. I then remembered my prayer to Him. That was His answer. He wasn’t going to heal her, so He honored my request to take her swiftly. A day after she was born, she died. Immediately, social workers came in asking if I needed counsel, the specialist came in to share with me the symptoms of post-partum depression and to let me know how worried she was for Christian. We were experiencing financial hardship at the time, so the mortgage company was calling our cell phones. Our daughter’s death didn’t matter to them. Each encounter took a piece of me. I didn’t want to talk or see anyone except for my Pastor and my husband. I didn’t even want to talk to God.The next day, I was released and Christian was released from Westchester. I had a newborn to take care of, a long recovery from the birth trauma, and a funeral to plan.
This was my welcome to motherhood? Where was my experience? My joy? How would I get through this? I remember worrying about Christian. Twins have a bond, a connection that runs deep. Would Christian feel the loss of his sister? Would he grow up feeling like a piece of him is missing? How would he handle having his sister for nearly a year to becoming an only child? While I knew it was not my fault, I still felt guilty and robbed. I kept these feelings and thoughts to myself, but God knew. Almost right on cue, I received a phone call from my Aunt sharing with me a dream she had. I was tired and not receptive. She said that the night before Eve passed she had a dream that Jesus was carrying Eve over to Christian who was fussing allowing him to say goodbye. As Jesus held Eve close to Christian, he smiled and fell back asleep. I found out later that the exact time Eve passed, the nurses noticed Christian awake out of a dead sleep crying and fussing, they then noticed that he sighed, smiled, and fell back asleep. At the time, I couldn’t see the gift of closure God gave Christian. Another miracle that I seemed to miss.
The first few weeks felt impossibly numb. I was in a haze with little time to grieve for my little girl. We decided to have a memorial service for her. People in the church volunteered to play music for the service, and our Pastor was tender and available to us. I was so angry with God, that my “prayers” were often yelling sessions.
Prior to the service, I had my 6 week check up. The obstetrician who delivered my twins, looked at me and said, “I have to tell you something, Nicole. It wasn’t looking like you were going to make it. You lost so much blood and we weren’t sure the babies were going to make it either. When I performed the C section, I saw something. I saw your daughter spooning your son. She had her butt facing me, and she had herself wrapped around your son in a protective stance. If she hadn’t done that, your son would have swallowed too much blood and choked on it. I have never seen that before in all my years, especially with a baby in her condition. It was a miracle that you all survived. You are the strongest woman I know”. A miracle? I left the office confused. Had I been looking at this all wrong? Yes, I was in agony. My cries wracked my body, tearing at my stitches, until I thought I would break, but yet, a miracle?
That day, I went home to and talked to God to confirm what I knew in my Spirit. God, in His infinite wisdom did not give us what we desired, but what He knew we needed. Eve’s purpose was clear, and in her one day she did what many can’t do in a lifetime; save a life. Eve grew and thrived not because God was preparing her for a healing but for a mission. It turned out that the small amount of blood in Christian’s stool was the amount he swallowed, thanks to his sister who took the brunt of it for him. As horrific as this was, it could have been worse. The thought never occurred to me. What could be worse than losing a child? My husband losing two children and his wife.
The day came when her room with her little girl crib and bedding as well as her closet full of dresses and shoes, and pink had to be stored in the attic. This room that we prepared for her now how to be deconstructed. We cried and it felt like another memorial service, but I couldn’t walk past that door anymore knowing that it was still decorated for a child that would never come home. Even after it was emptied, it felt barren. It reminded me that I would never feel her kick on my left side again. Every time I thought of her the left side of my womb tugged. While nothing would replace her, I knew that my days of bearing children were not over. We had other embryos waiting when we were ready and healed if God allowed.
I started to feel ill, and wondered if something was wrong. It was discovered that due to the trauma of birth, my adrenal glands burnt out and no longer produced cortisol which is necessary to live. As I went on steroids to manage the disease I had a host of symptoms and was even hospitalized several times. My endocrinoligst then shared the news that I would never be able to go through the In Vitro process again. The hormone injections necessary would likely kill me because of the disease. Once again, knowing that life begins at conception, we knew we would never destroy them. While the insurance company will store our miracles for 5 years after that a choice for destruction or donation will have to occur. The thought of giving our babies away is heart breaking, but once again, you never know how strong your Faith is until it is tested under the most painful circumstances. Today has enough worries of its own, and so we left it all in God’s capable hands and will follow His will when the time comes.
The yellow room became my painful reminder of what I lost, until God spoke. He impressed upon my spirit to start a company called, “Simply Eve Fragrances”. At the time, I was dealing with a new illness, managing a baby, and trying to handle grief. Still, I obeyed and registered the name with the County. It sat there for a year. I wondered if I heard God correctly. A year after registering the name, God impressed upon my spirit to set up a gate in the room and leave it open. Not seeing that door closed began to heal me, and every time I walked passed it I began to exhale. He then asked me to start ordering supplies. The supplies were to be placed in Eve’s former room, the yellow room. While I obeyed, He began to drop knowledge, recipes, and product lines in my mind regarding living a healthy life. God wanted to take back the idea of “wellness”. Too many used the term to practice alternative therapies while attaching doctrine to it. God created essential oils and the things used in such practices and wanted His people to have access to such alternative treatments based around what He created rather than man made ritual. As the passion grew, He began to impress that I work in the yellow room. The first time, I cried, but then it became easier.
This past week I launched the Facebook Business page called, Simply Eve Fragrances. I make natural skin care items and am currently working on medicinal items as well. I work and package in Eve’s room, and the amount of healing it has brought is amazing. As the product line grows, and God continues to work, I know that even more healing will occur. With God as a business partner, anything can happen. A part of the proceeds from sales will go to the organization SOFT which supports parents and children with Trisomy 13 and 18. God has given me such a gift by allowing me to honor Him and Eve in this way.
These last two years have been a tough road to travel, but there are so many blessings too. I have a loving, brilliant, and adorable toddler. I have a marriage rooted in Christ with a husband who is a treasure. Experiencing the death of a child, an illness, and financial hardship simultaneously will often destroy a marriage. I have found that my husband and I are closer than ever, and I can only attribute that to Christ being at the center of our lives AND our marriage. Father’s Day and Mother’s Day are triggers for tears as are major holidays and birthdays. Some days all it takes is for me to see a little girl with curly hair, and I become misty eyed with tears. There is no getting over the loss of a child for the parents who experience such pain. However, God made beauty from ashes. The yellow room is now the “headquarters” of Simply Eve Fragrances. Every time I work in there, I smile at the thought of bringing glory to God and creating a legacy for my daughter.
“Incompatible with life”? I don’t think so.