October 22, 2013 when I was 16 weeks pregnant, I heard the words that no parent want to hear, ¨your baby has anencephaly, a condition NOT sustainable for life following delivery". Your baby is " incompatible with life" "non viable pregnancy". And they urged abortion as abortion was the cure.
Today, December 26 2015, the "non viable", the "incompatible with life" baby just celebrated 21 months old and celebrated her second Christmas with her family and friend who love her unconditionally.
My husband and I were terrified. We were given NO hope. We were told we would not bring our baby girl home. We were offered immediately the opportunity to abort our "imperfect" baby. We were offered amniocentesis. We were offered many things. The one thing we were not offered was hope. And hope was the one thing we desperately need.
My heart revive all the same feelings all over and over again when another mother and father face this terrible diagnosis. For the last two years I have walked all over again together with other parents facing the same fate. I have witnessed the love these parents have for their babies. Some of these babies have lived from minutes to hours, from hours to days from days to months. I have learned about the true meaning of love and faith.
After reciving Angela's diagnosis of anencephaly, in the midst of my darkness, I went to the internet in all my fear, looking for some sort of guidance, for some sort of hope. Searching everywhere, ( PLEASE DONT GOOGLE ANENCEPHALY) I saw and read all the ugly horrific names people call our babies. It was unnaceptable. I was devastated. I saw the pain. I saw the suffering that was ahead from us. I saw the immense sorrow and grief we were accepting to go throught out of love for our baby girl. I continued reading stories that gave me hope. I found baby Faith, she lived 93 days, Baby Victoria from Brazil who lived over two years with acrania/anencephaly. And many other stories whose babies lived minutes. This is when I first felt a flicker of hope. I felt that my baby was going to live the minutes, or hours or the days that God had for her. I knew her life was worth to experience love for as short her life would be.
I found stories of others who had traveled this road before and survived. I found families who had lost their anencephalic baby. I found other families who had a child living and thriving with anencephaly. All these gave me hope. I asked for a miracle, and the miracle was, to see my baby alive at birth. This all what I asked for. And from all the stories I read in the internet, I found one thing they all had in common- whether their child was living or not - they all felt blessed for the experience of carrying to term.
March 23, 2014 baby Angela was born and she did not die. We took her home with hospice care, one doctor said that "no sophisticated interventions were needed" because she was not going to live, only mensure comfort. We were taking care of her with so much love as we were taking care of Jesus wounds. Baby Angela was thriving, once again the doctors told us that all what she was doing was done by reflexes. My mother's instint, told me that there was more that needed to be done.
April 2014, a month after her birth we found new neorologists and plastic surgeons, that believed in her will to live and wanted to give her another chance, She got a surgery to close the skull and to remove her encephalocele covering the opening almost at two months of life. Since her birth we have witnessed so many miracles, she has been touched by the grace of God.
Angela is 21 months old, she has a severe developmental delay. She does not walk or talk. But she chirps like a little bird to let us know she is loved. she responds to our love and affection by cooing. She let us know she is happy by kicking her legs. She loves worship music, when she listens to music sometimes she lifts her hands, and coos and tears comes from her eyes. Yes, she might not have a abled body like any healthy person but she is praising the Lord in spirit. Angela's cooing and sounds changes according to her mood.
She loves kisses and hugs. She loves storytelling and play time with her big amazing sister Elizabeth. She loves musical toys. Sometimes she giggles and laughs out loud, and we love love to see that. She enjoys and loves the life she has. We love her unconditionally and we are going to support her until she takes her last breath. We are making sure she knows only love, we are making sure her days are lived to the fullest.
Life is a gift. She is the greatest teacher for life. The biggest thing she has taught us is to appreciate the little simple things that we thought were not important in our lives. She taught us to just value every single day that we get as it comes. This little beautiful girl has given us more than she takes. She is the light in our home, she is the strength we need, she gives us a deep peace and grace. she really has taught us to give everything without waiting for a reward. she taught us we can choose to live happy in espite of unimaginable odds.
Today, I want to tell to all the parents receiving a poor prenatal diagnosis, NEVER give up. No matter what happens, your baby is worth and will bring so much joy and peace to your heart. Dont reject the beacon of pure joy and light. Termination of pregnancy is NOT a solution to your baby's deformities. A diagnosis should not be a death sentence for your precious baby. I am not going to lie, this is not an easy road but is the only one worth taking. Just take each day as it comes, enjoy the beauty of love, enjoy your baby while you have him/her inside your womb.
Just focus on the life that the baby has and celebrate all the time you get. Make memories every single day. Celebrate every minute because you dont know many days you going to get.
Miracles do happen everyday, but whatever happens God is going to give you the grace and the strenght you need to face everything ahead.
Yes, our stories might be different, but I understand the heartache of getting a fatal diagnosis, I carried my baby girl Angela knowing that she was not expecting to live after birth and the pain is great. Know you are NOT alone, there is always someone out there walking the same road or have walked the same journey. I want to remind you, that you are not alone.
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