Life sometimes puts us before decisions that will forever change the course of our existence and the people we will be from that moment. This is what happened to Abbey and Robert, an Oklahoma couple, at that time parents of two girls, when they received the fatal news in the 19th week of pregnancy.
The girl who was coming was affected by a congenital malformation incompatible with life: anencephaly, a serious defect characterized by partial or total absence of the brain, skull and scalp. Nonetheless, knowing that she would live a few hours, they decided to go ahead with the pregnancy and give birth to their daughter and then be able to donate their organs.
A reason to be born and die
When they receive a diagnosis of anencephaly, due to the severity of the malformation and the minimal chances of survival, 95 percent of couples decide to abort. But his parents found minimal hope to move on. They felt comforted knowing that, at least, their daughter's fleeting life would make sense. A way to heal your deep pain.
Annie was born on June 26, 2013 and he lived only 14 hours and 58 minutes. Less than 15 hours in which the girl was clothed by her parents and her two older sisters, Dylan and Harper, now five and seven years old.
"Carrying out the pregnancy of a terminal baby was by far the most difficult decision of my life," Abbey confessed.May is anencephaly awareness month. I'm not really sure what that means for me, if you are my friend on social media you are likely already aware of what anencephaly is. So boom. I did it. You are all anencephaly aware. I guess what it means for me is more frequent thoughts of and more intense longings for Annie. I was looking through @sarahlibbyphotography 's photos and there are distinct memories associated with several of them. I thought I would share some of them this month. I will forever cherish the short time Dylan and Harper Lou spent with their sister. They each had the most perfect interactions with her, no one was afraid or shy, and it was the sweetest and most heartwarming thing to witness. Just look at all that sista love. ❤️❤️❤️ #pistolannieahern #anencephalyawareness
A photo posted by abbeyahern (@abbeyahern) on May 7, 2016 at 9:04 p.m. PDT
"I'm lucky to have an incredibly good and supportive husband and two healthy daughters to hug when I couldn't stop crying. The doctors told me that Annie wouldn't suffer any pain," explains the author of the goodhousekeeping website, where she recounts her experience.
Finally, his organs were not viable for transplantation due to low oxygen levels, however, they could be used for research, and they could donate heart valves to be transplanted in other babies with malformations.
A year after Annie's birth, the couple went to have a new ultrasound. They were waiting for their third daughter, Iva, who just turned two.
Anencephaly awareness… I'm still trying to figure out what that means for me. It's not a disease. We don't need to rally and raise money for a cure. It's a birth defect. It just happens. Like other neural tube defects, it's multifactorial. The only discernible link to a cause is a folic acid deficiency. To protect any future children I take 100 times the "normal" dose of folic acid every day, just in case. My personal "awareness" campaign this month has not really been about anencephaly. It has been about loss. It has been about love. I want to make my world aware that when someone suffers a loss, whether it be a child, a spouse, a sibling, a parent, a friend, long after the world moves on, we are still here. Still hurting. This photo was taken by my husband, moments after Annie died. I SAW her leave, so I was very aware that her little body was just a vessel. I clung desperately to that vessel, and I find myself looking at this picture and wishing I could hold her one more time. This photo hurts just as much today, almost 3 years later, as it did the day it was taken. I have recently realized that this journey will likely never end. Her absence is everywhere. The pain ebbs and flows, but it is always present. If someone you know has experienced loss, here is some advice: -call them, even if you are worried you'll bother them -if you aren't a phone person (who is, these days) text them and let them know you are thinking of them -show up with food (or, even better, booze) -ask them how they are doing -don't ever hesitate to say their loved ones name, or ask questions So many of you have done some or all of the above for us, and that has helped to heal our hearts tremendously. There have been many genuine moments and heartwarming conversations that never would have happened if people worried about "spoiling the mood by bringing it up." Even this #anencephalyawareness outlet has allowed me to breathe new life into our daughter. She was meant to be shared from the moment she was created, and I am beyond proud of the work she has done. Thanks for letting me over share. ❤️ #pistolannieahern #anencephalyawareness
A photo posted by abbeyahern (@abbeyahern) on May 18, 2016 at 8:28 AM PDT
Folic acid, an essential vitamin
The neural tube is the part of the embryo from which the brain and spinal cord are formed and begins to form during the first month of pregnancy. If there is any type of anomaly during the formation process (for example, if it is not completely closed), defects in the brain and spinal cord can occur.
There are two anomalies that occur more frequently whenever there is some type of defect in the neural tube: spina bifida and anencephaly (or open spine). The latter occurs in approximately one in every thousand births, most of which ends in miscarriage.
The causes can be multifactorial, but it is proven that folic acid is a vitamin taken during the preconception period and in the first months of pregnancy. helps reduce the risk of neural tube defects In the newborn. In addition to the undeniable importance of folic acid there are other tips to keep in mind that could help prevent birth defects in the baby.
