Coming out with Anencephaly: One Year Later

On March 10, 2011, Ben and I widely dispersed a letter that we had very carefully written, introducing the world to the child that we now knew to be our very, very special baby boy Gabriel. This was at once an announcement of his gender, his name, and his fatal condition. We had read accounts of other families who were questioned on their decision, even told that the choice to carry their fatally ill child to term was wrong, and we wanted to be clear to the world that we loved our child without condition.

We were met with overwhelming love and support.

One year later, I invite you to revisit the letter, and the time when you may have first learned of Gabriel's story. I hope that you are among the many, many people whose lives have been bettered for having known of a little boy who changed the world before he was even born.

Dear Friends,

We would like to introduce you to our son, Gabriel Cude. He likes spicy food just like Dad. Like Mom he has long legs land enjoys staying up late and sleeping in with her. We learned he was on his way on September 28th. On November 18th our world changed when we saw him via ultrasound and heard his heart beat. I suppose every parent thinks their child is special, but our world changed again on January 31st when we learned just how special our son is. That was the day we learned that our son has anencephaly, and there is no easy way to say what that means: Gabriel will not live long after he is born. Babies like him are often stillborn, but we will pray for hours or even a couple of days with him after he is born.



Anencephaly is a neural tube defect that occurs in the early stages of pregnancy, and it is fatal. Our son's defect is unrelated to our previous miscarriage. This is a medical anomaly that occurs in 1 in 1,000 pregnancies in the U.S. One might say we got stuck with this, however we believe instead that we were chosen to be father and mother to a very special baby boy. Being parents to our children, both of them, has been the greatest pleasure of our lives.



You might wonder why, with a fatal diagnosis, we would continue this pregnancy. We were given the choice to terminate but those familiar with our views on life should not be surprised that we didn't take that choice. We learned that we could also induce labor at any time and deliver our son right away, but we found that the Catholic Church opposes that option, and as Andrea is a devout Catholic and Ben is supportive of her beliefs, that route was ruled out. While this helped seal our decision, what it came down to was this: We were told our son was going to die, but we were offered four more months with him during which he would be healthy and vital. We accepted that gift.



We know with this news you may not know how to respond to us. We considered keeping this a secret until after Gabriel's birth until we realized if we did that we would be denying you an opportunity to love our son and learn from him what we have learned: That a person doesn't have to look like everyone else to be wanted, longed for, and loved beyond measure. We have learned that there is nothing a doctor can tell us that will make us stop loving our son. So we hope that you will treat us as you always have. We welcome your questions about our baby and his condition. We hope that you will continue to ask us how he is doing, because he is still here, very much alive. His heart still beats strong, and he is and always will be our son.



We will continue to hope and pray for a miracle, however we truly feel that the miracle we should be looking for is not Gabriel's healing. We believe that we are being asked to accept this challenge with grace, and we are trying to do that. But miracles take many forms. When we were told that our son had a fatal condition, we truly learned to appreciate the little things, to cherish this pregnancy in a way that we didn't before. For months we have been told to sleep now, because when our baby is born his crying will keep us up all night. After our miscarriage this couldn't be farther from our own attitude, as we would welcome a crying baby in our home. Now, it would truly be a miracle to be able to hear Gabriel cry. Babies with anencephaly often are not able to cry, and we will be grateful if Gabriel is able to.



Gabriel is Hebrew, and means "A hero of God." In Catholic tradition the Archangel Gabriel is a messenger of God. Our Gabriel is both to us. He is fighting a heroic battle for his life, and while Andrea is able to protect him while she is carrying him, the delivery is dangerous and we pray he wins that battle so we can meet him face to face. He brought us a message of faith and love in the face of desparate sadness. The message you will take from him is largely up to you and how you choose to see him. We believe if you open your heart to loving Gabriel for the unique being he is, his short time on earth will be full of meaning. We hope you'll take this journey with us.



Sincerely,

Ben, Andrea & Gabriel Cude

GABRIEL AND ANCEPHALY

From the National Institute of Neurological Disorders and Stroke: "Anencephaly is a defect in the closure of the neural tube during fetal development. The neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo. Anencephaly occurs when the "cephalic" end or head of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. . . The cause of anencephaly is unknown. . . The prognosis for babies born with anencephaly is extremely poor. If the infant is not stillborn, then he or she will usually die within a few hours or days after birth."

Anencephaly effects 1 in 1000 infants in the U.S., for a rate of occurrence of 0.001%

The cause of anencephaly is still unknown, though it is estimated that 50-70% of cases of anencephaly could have been avoided if the mother had been on a prenatal vitamin or folic acid supplement. For the record, prior to Gabriel’s conception I was on both.

Anencephaly occurs in girls more often than boys. We think that makes Gabriel extra special.

It is estimated that between 90 and 98% of women who receive a diagnosis of anencephaly choose early termination.

Of the stories I have read of women who decide to continue the pregnancy, 0% regret that decision.

The rate of recurrence for anencephaly is slight, only between 1 and 4%. That rate is reduced with proper folic acid intake.

Besides the obvious defect, which can be covered with a cap while we are enjoying our time with Gabriel, babies with anencephaly are perfectly formed, though their faces are distinctive.

A stress free delivery helps to increase the chance of a live birth. Accordingly, Gabriel will be delivered two to three weeks early by inducement. We look forward to meeting our son and pray for time to spend with him after birth.

For those interested, I have set up a Caring Bridge journal. The Caring Bridge website is free to families who are experiencing a medical crisis, and allows members to chronicle their journey with journal entries, photos, tributes, and a place for visitors to the site to leave comments of support. Gabriel’s Caring Bridge website can be found at: http://www.caringbridge.org/visit/GabrielCude

The following website has been invaluable in terms of information, stories of babies who were carried to term, and pictures. It also led us to a support group specifically for families of babies with anencephaly. Andrea has even virtually "met" the creator of this website, who lives in Switzerland. We invite you to explore the site to read stories of the many lives changed for the better by babies with anencephaly. The website’s address is: http://www.anencephalie-info.org/e/index.php

We have learned through our research about a medical study of Duke University that has been going on for years. We have decided to participate in this study, so that hopefully our loss can lead to better knowledge, understanding, and hopefully one day prevention and/or a treatment for anencephaly. Currently, treatment is supportive only.

http://www.chg.duke.edu/diseases/anencephaly.html

Through this pregnancy, one song has expressed better than I can how I feel about motherhood. It is called "The Story," by Brandi Carlile, and it sounds like the words of a love song. For a love song to express my feelings for my children makes sense, because I've never loved as deeply as I love them. I've posted them last, to say what I couldn't say.


All of these lines across my face

Tell you the story of who I am

So many stories of where I've been

And how I got to where I am

But these stories don't mean anything

When you've got no one to tell them to

It's true...I was made for you

I climbed across the mountain tops

Swam all across the ocean blue

I crossed all the lines and I broke all the rules

But baby I broke them all for you

Because even when I was flat broke

You made me feel like a million bucks

You do

I was made for you

You see the smile that's on my mouth

It's hiding the words that don't come out

And all of my friends who think that I'm blessed

They don't know my head is a mess

No, they don't know who I really am

And they don't know what

I've been through like you do

And I was made for you...

All of these lines across my face

Tell you the story of who I am

So many stories of where I've been

And how I got to where I am

But these stories don't mean anything

When you've got no one to tell them to

It's true...I was made for you

http://youtu.be/dYyn2rZ_QYI