Today I'd like to share an incredible story with you about a family I met last year who fits this description. I do hope that all my facts are straight, but this is the story I heard and understand.
Imagine this. If you can...
You are 20 weeks pregnant awaiting your ultrasound. Your family surrounds you - husband, parents, mother-in-law, and your baby girl - excited to see this precious life growing inside you!
As you lie there with your belly exposed and covered in gel, you enjoy watching your baby kick and move on the screen. You barely notice the ultrasound tech is acting strange but then she suddenly leaves the room "to get a new probe." She returns with a radiologist. They look closely at the screen, and then the radiologist expels a heavy sigh...
You know this is not good. "What is wrong?" you ask.
"There is an abnormality," is all he replies.
Your heart pounds and your brain wanders a thousand different directions, but one question emerges. "Is the pregnancy viable?" Is it really so bad, will my baby live?
"No." The answer that shatters your world. That was it, and they turned off the machine.
But you still NEED to know...is it a girl or boy? The tech questions if you're sure, then turns it back on. It's a BOY!
Later, you meet with your doctor and finally learn more. Your baby has Anencaphaly, meaning most of his brain did not develop, nor did much of his skull. He will be deformed from above the eyes and will die shortly after birth, if not before. You are advised to abort, to end your pregnancy - 95% of parents do.
In the wake of this devastating news, you need to know more. You created this baby out of love and can't bear the thought of just ending his life! You immerse yourself in research and reading others stories. And through the sadness that surrounds you, there is a glimmer of HOPE.
Hope that you can meet your baby boy and hold him in your arms, if even for just a short time. This tiny ray of Hope motivates you, it drives you with a fervor. You will do what it takes to provide the best chance of meeting him and holding him ALIVE.
You realize that your best chance at that is to have him delivered via C-section, so as not to cause further harm during the birthing process. You go to your doctor with this request.
You are advised against it. It's not worth the risk to you, to endure surgery for a baby that cannot sustain life for any significant amount of time. You are not swayed. You insist that this is what you want.
The hospital board actually holds a meeting and votes on whether to allow you to do this. They vote NO. They want you to meet with them. You decline and press on. Then one woman, one doctor sees you and your passionate request. She fights for you and with you...and in the end, you do schedule a C-section.
Your emotions and nerves are a jumble that October morning months later as you head to the hospital for your surgery...hoping and praying you will get to meet your son while there is still life in him.
You have prepared for this day. A priest is present for your baby's baptism. A photographer is there to capture these critical, precious moments. A cake is prepared to celebrate his birthday. And your family support team anxiously awaits down the hall.
Your son is delivered. His head looks strange, he doesn't have all 10 fingers and toes, but he is ALIVE. To you he is beautiful, and he is placed in your arms to love and hold along with your husband for whatever time you have.
Your family members even get to come in the room and meet him. His big sister gives him loving kisses. He barely moves, but he is so peaceful in your arms. His heart rate gradually lessens until it is no longer beating. Noone tries to revive him because everyone knew it was inevitable. Yet he gave you 76 minutes. And you are thankful. Emotional, overwhelmed, yet feeling blessed that you held your son in your arms alive for 76 sacred minutes.
One Incredible Journey
The story I just invited you into happened to a young family two years ago. On Wednesday, October 8 they celebrated Caleb's 2nd birthday. Though he was not there to smear around the icing or play with new toys, his parents and sister's shared a birthday cake in celebration of his life.
 |
| Caleb in his mother's loving arms. |
 |
| Caleb and his three birthday cakes. Though his life was brief, it will always be celebrated. |
I just met this couple last summer at a friend's birthday party. Caleb's mother was pregnant again at the time and has since had a beautiful, healthy baby girl. I was amazed to hear some of their story at that time, but recently I had the chance to sit down and listen to Caleb's mother Kristyn share their incredible journey. It touched my heart. If you'd like to read more, she documented their experience on CaringBridge.com
Anencephaly is a frighteningly severe birth defect, and it is closely related to spina bifida. Both are defined at Neural Tube Defects (NTD) and occur very early in pregnancy (usually before mom even knows she's pregnant) and are a result of the neural tube not closing all the way. But without most of the brain developed, babies born with anencephaly typically only survive a few hours if at all. The only known thing that may help prevent the risk of NTD is taking high doses of Folic Acid prior to getting pregnant. However, it's not guaranteed.
This story may not be as uncommon as it sounds. In fact, just yesterday I saw a post on Facebook from a page called Prayers for Shane. Shane was born yesterday with anencephaly, and much like Caleb he blessed his family with some precious time with him alive. A few hours later he died peacefully in his mother's arms.
I did not ask permission to share Shane's family photos, but with almost 900,000 likes on his Facebook page it's clear his loving parents are happy to share their incredible journey.
You may ask what it is that motivates these parents to disregard medical advice and insist on delivering a baby that by the world's standards is severely malformed and has no chance at any longevity in life. The answer is... love that goes beyond human understanding.
This is what Caleb's mother wrote soon after they learned of his diagnosis:
We created this baby out of love and all we want is a chance to meet him. We know our time with Caleb will be limited (if we are even going to be blessed enough to meet him alive). Of course we are praying for a miracle and hope the doctors are wrong, but if they are not we just pray for enough time to hug and kiss him and tell him we love him before we have to give him back to God.
No comments:
Post a Comment