October is Pregnancy and Infant Loss Awareness Month, as declared by President Reagan in 1988, and October 15th is Pregnancy and Infant Loss Awareness Day.
This is Eileen's story...
In the Spring of 2014, I was pregnant with my third child. I was so excited! I had even quit my job teaching to take care of my three young children. Everything was going perfectly in the pregnancy. No morning sickness... no problems at all. I always describe it as the perfect pregnancy (unlike my twin pregnancy before).
On June 30, my husband and I went in for the 18-week anatomy scan. We thought we were just finding out the gender that day. We went into my doctor’s office, but based on high levels in my AFP blood test, he sent me to Maternal Fetal Medicine at the hospital for the ultrasound. He said my baby had a 1 in 4 chance of having spina bifida.
I started to panic and Google. I calmed down and thought “It’s okay, I can handle this. Baby is still okay.” I went into the ultrasound room. It was very quiet. The ultrasound tech looked at the baby for about 5 minutes and excused herself to get the doctor. I knew something was wrong. It was the longest wait of my life.
When the doctor returned, she very coldly said “Your baby has anencephaly. It is a fatal condition. It is not compatible with life.“
I just couldn’t believe it! I asked what it was. She explained that anencephaly is a rare neural tube defect that happens within the first few weeks of pregnancy, but isn’t detected until later. The top of the spine never fuses with the skull, therefore baby has no skull and no brain (because it is damaged with the amniotic fluid). She then showed me on the ultrasound that the baby had no skull from basically right above his eyebrows to the top of his neck.
I had never heard of this condition before, but now, of course, it is a part of my everyday vocabulary. We found out that the baby was a boy. That day was basically a blur of emotions. I have never felt so much pain in my life. The heartache of never knowing my third son and being robbed of a life with him. The pain is unbearable.
We named our son Finn - he left this earth and gained his wings on July 3, 2014. Nothing is more heartbreaking than saying goodbye to your child. I talk about Finn every day. He is my third son and I refer to him as such. I don’t do it to make people uncomfortable, but he is my son and I love him just like I love my living children. Pregnancy and Infant Loss has a stigma attached to it, and many believe it is something that should not be discussed. However, it is a very important subject that SHOULD be talked about because families should not suffer in silence. Families should not have to forget about the child they lost.
One of the things I did to heal my heart was to talk about him. The best place to talk about him is at HOPE Group, with other grieving parents who “get” it. I encourage anyone who has suffered a loss to find some sort of group to talk to. It has helped me in so many ways. I am also lucky enough to have such supportive friends and family to lean on as well.
Even though I am pretty comfortable with discussing my loss, putting it to words has been difficult. Writing this article was difficult for me. But if it helps even one person, it will be worth it.
~ Eileen
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