While observing with the probe, the radiologist got very silent and serious... I could feel tension in the room and I began to worry. Him and the Dr told me to get dressed and meet them in the other room to talk. Roilan and I started to get really worried but I hurried.
In the other room the Dr and Radiologist wrote a word on a yellow piece of paper... “Anencephaly” followed by the word “Polyhydramnios” as well as “Perinatologist Consultation, Genetic Counseling, Induction of Labor.” I didn’t understand... The radiologist began to explain that the baby had a serious, fatal birth defect in which he developed without a brain as well as the top portion of his skull, called Anencephaly... He also explained that I had a severe excess of amniotic fluid and that he recommends that I induce as soon as I possibly can for my own medical safety and that the baby will die either in utero, at birth or shortly after birth. I felt like I had had the wind knocked out of me... My mind was reeling. Nothing made sense anymore. Something inside of me died in those moments.
I asked my Dr what caused this, she said it is unknown. It categorizes under neural tube defect which is usually a lack of Folic Acid but she said in my case it can’t be since my nutrition has been optimal since the beginning of my pregnancy (My blood tests showed I had high nutrition and I was the healthiest pregnant woman they had ever seen) she said it is theorized to be a genetic mutation or it could be an environmental cause.
I couldn’t hold back the tears... I had so many questions. I cried all night and didn’t sleep. In the morning I called Dr’s, and clinics, and my insurance, and church groups who support these types of cases, and internet sites such as Be Not Afraid... We met with lots of Dr’s over the next few days and all of them said the same thing. I had a huge amount of amniotic fluid indicating that the baby has a severe case of anencephaly since normal babies regulate the volume by practicing breathing, swallowing, etc, our baby is going to die and if I don’t want to die as well then I need to be induced as soon as possible. If the baby dies in utero, I have 12 hours to get him out because he toxifies my body similar to gangrene.
I talked this news over with some of the church groups and they got pissed off by the Dr’s recommending me to induce and that I should “Carry to term” meaning I should carry the baby as long as naturally possible and leave the outcome up to god. My head reeled... I had to get a second opinion. We talked with a midwife friend who gave us an appointment for another diagnostic ultrasound downtown for Friday, so we went... The diagnosis was the same and I just cried and cried. I had hoped it was a mistake and that my baby was really normal... That ultrasound showed I had even more amniotic fluid than I did 5 days ago and they told me to be in touch with a Dr asap to discuss inducing.
I was tormented the whole week and I thought I would never be able to stop crying. Every minute I would just cry and wish that things would be different. I wanted my son to live so bad, I had so many hopes and dreams for his future, our future. How could this have happened to me? I am very athletic, so is my husband... We are two of the healthiest people we know, we never eat processed foods, we don’t eat fast food. We were completely stumped.
I found a Dr willing to induce me on Wednesday March 12... I took the appointment. People called me and told me I was sinning if I went through with the inducing since it would surely kill my baby... Unfortunately with this diagnosis there would be no hope regardless. It was honestly the most difficult decision I had to make in my life and my husband and I talked it over in serious depth over and over. It was the only decision that was right for us and wouldn’t bankrupt us since my insurance plan wasn’t willing to cover much of the costs..
I also didn’t want my son to suffer, even though they claim these babies don’t feel pain, from all the stories I had read of other babies with anencephaly being carried to term... some people put their babies on machines to keep the body alive as long as possible. I couldn’t imagine keeping my suffering baby on a machine... that wasn’t life. At the same time it was hard because I would feel him kick in my belly and it made me wish everything was fine. He felt so strong and I just wanted more time... I wanted him to know how much I loved him, how much I wished for him and didn’t want to let him go... I stopped crying and just spent as much of those last days touching my belly and trying to talk to him, and praying for my family in heaven to please watch over him when it was his time to join them. I was a wreck and I felt like I was going crazy with the grief.
This was my first pregnancy and I was so afraid of being a mother, I was afraid of my child hating me, or being a bad mother, or having twins, or no longer having time to be a performer... Never did i imagine that I would have to be afraid of losing my son before he was even born, this never happened to anyone in my family... I kept asking, Why Me? Wednesday came fast... Inducing was the most horrible pain I had ever felt... Everyone told me that having a baby was hell but you get heaven afterwards when you hold your baby... There was no heaven waiting for me. I was miserable and I suffered excruciatingly knowing he would leave me forever. While I was pushing I regretted it, I screamed and I cried... My mind constantly returns to that moment and all of the broken dreams and fantasies that helped me get through.. At one point I swear I must have passed out because I saw myself reaching for my baby but he was falling away from me, out of my reach... in the end my baby was gone and I was nearly rushed to the ER due to too much blood loss. I still thought he was so beautiful... He was my son... He will always be my son and I will never forget him. I asked the nurse if she could please stamp his hands or feet or anything for me to keep... I felt so broken... I sat in recovery and wished for death and thought maybe it would have been better to wait, to carry to term and risk death.... To have just a little more time with him.
My precious Son, though your existence in this world was short, you will always be remembered. I am so grateful for everything that you gave me and all the strength that I found in you. These last two weeks knowing that your condition was fatal and asking so many doctors for other opinions, wishing and trying everything we could save you... has been the hardest and most painful weeks of my life. I will miss your little flutters and tiny kicks and please know that a piece of my heart stopped forever when I was told by doctors that yours had stopped on March 12, 2014 during your delivery. My little Elias De Paz has grown his angel wings. I love you forever sweetheart. We will always be your Mommy and Daddy and you will forever be our angel.
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