Author’s Note: This article was written in July 2011 when Katie was first born. Her birth and life brought people together and sparked the formation of Katie’s Fighters, a non-profit organization that raises anencephaly awareness and helps families affected by anencephaly. The community followed her progress as she passed major milestones like her 3-Month birthday and we all hoped that she would endure. As the months passed, Katie’s health worsened. Very sadly, Katie passed away April 2012.
The original story follows that was written when her family, friends, the community and even strangers around the world waited each day to read about Katie’s progress on the Katie’s Fighters Facebook Page hoping to find news that she was still alive and fighting. Each of those mornings were joyful reminders of miracles and thankfulness because Katie defied the odds for another day. Katie’s family and Katie’s Fighters continue to help families through diagnosis and loss and Katie is forever in our hearts.
Kaitlin Mary was born on a Wednesday. She breathed and cried for the first time on July 13th, 2011 just after noon. Her mother carried her for thirty-eight weeks. She was born small, weighing just 4 pounds and an ounce and she stretched her legs to fifteen and a half inches. She is called “Katie” by her father and mother, her older sister, and the many, many other people who love her.
She was born an anencephalic baby. She was born. But, she was expected to die. Doctors told her parents her newborn affliction was “incompatible with life”, a woefully clinical euphemism for what it really means. And, also woefully inaccurate. You will see that she is full of life.
During the months leading up to birth, most parents excitedly plan their newborn’s first photo shoot, what matching outfit will be worn home, or maybe what nursery decor will welcome their healthy baby.
Dawn and Michael made funeral arrangements. They selected a casket. They put the coroner’s number on speed dial. They ensured a priest was on stand-by so their daughter could be baptized. They explained to their five year old, that her baby sister will be born, but that she will go to Jesus quickly. They picked out a welcoming outfit. And then they picked one to bury her in.
Katie was sent home with her parents, barely weighing four pounds, about the size of a gatorade jug. The doctors let her go without much accompanying instruction despite her intense ailment and low birth weight because of the fatal prognosis. Her parents wanted her to ascend from home. They had the paperwork to fill out. They had their neighbor-Sheriff’s number to notify upon Katie’s passing. They had what they needed.
But, she lived. At this writing, Katie has celebrated nine birthdays, one for every 24 hours she keeps fighting. Everyone hopes for more. But, they trust that God will take Katie when she is ready to go. She’s just not ready yet.
Anencephaly is a serious birth defect that has left her without parts of her brain or skull. It’s a neural tube defect (NTD) which means that it occured during the first month of pregnancy, probably before Dawn even knew she was pregnant. Katie’s neural tube didn’t close all the way. Most anencephalic babies are born without the front part of the brain (forebrain) and the thinking and coordinating part (cerebrum).
Image of An Anencephalic Child
The Centers for Disease Control and Prevention (CDC) estimates that each year, about 1 in every 4,859 babies in the United States will be born with anencephaly. Low intake of folic acid before getting pregnant and in early pregnancy increases the risk of neural tube defects like Katie’s. And, for reasons that are not well understood, hispanic women are at higher risk of having an anencephalic child.
Katie was born with a fleshy notch on top of her head, which is really part of her brain encasing. Her parents dress it frequently and cover the protective bandage with a modified pink preemie cap to keep her head warm. She was also born with a cleft palate. This gives her difficulty in achieving a latch when eating from a bottle but it does nothing to quell her determination to do so. She is a vigorous eater and she fights for milk the way she fights to breathe. One of Katie’s eyelids failed to separate as well. This lends further to the asymmetry of her face with a bump protruding where her left eye should be. All of these facial anomalies might seem to form a disfigured baby to callous eyes. But, the truth lies in the accepting vision of the small children who come to see her. They see that she is small like a baby doll. They see she is alive. They see she is adored. Anything unsightly perceived beyond these three truths is an ugly distortion. Katie is beautiful.
There isn’t a known cure or standard treatment for what ails her. Almost all babies born with anencephaly will die shortly after birth.
Except for Katie.
Katie behaves in a way that defies expectations. She was expected to die in the hospital within hours of delivery with little or no abilty to respond to stimuli. But she does more than exist. She responds.
And she clutches…..
And she smiles…..
It may seem unlikely that her smile is authentic. Even healthy babies aren’t supposed to be able to do that yet. But, if you have seen her, you know that she does. When Dawn bends down and kisses her tiny face, Katie’s mouth opens and upturns in what can only be the genuine smile of a baby in love with her mother.
Michael and Dawn expected to give birth to a blind baby. Developmental books inform that healthy newborns have poor eyesight but that they can see their mother’s face from the breast. When Dawn cradles her baby close, and nuzzles her little nose, Katie seems to open her blue eye, despite believed blindness, to see her mother. She seems to watch her, to search her. Some might think it unlikely that she can respond. But, this baby is a testament to unlikelihood. She is a miracle.
There have been many people close to the family who have reached out. A legion of women has been bringing meals to them for weeks and will continue until their vigil ends, and beyond. In April, local crafters who heard about the family’s impending struggle auctioned their wares to benefit the family and offset medical and funeral expenses. Later that month, a large group walked in honor of Katie for The March Of Dimes- March For Babies. A photographer volunteered to capture professional images of the family to help preserve these sacred seconds. And, a group of women rallied behind the family and formed Katie’s Fighters.
Led by pillars and dear friends to Dawn: Amy H., Danielle and Amy G., the group runs the Katie’s Fighters Facebook Page. It’s a page that is only as old as Katie and already has over 300 fans. Katie’s Fighters wants to spread the word about anencephaly, the need for more research and to help the family chronicle Katie’s struggle through photos, updates and prayer. The group has formed a support net around the family and is ready to catch them if they falter, become weak or need help. Amy H. is the central point for anything that needs to be coordinated outside of Katie’s immediate care. She, with the help of a few loyal friends, manage the website and protect the family from having to do anything other than just be with Katie.
The friends and extended family who have come to help Michael, Dawn, Lina and Katie are truly amazing. But, there are not words to describe the strength, love and resolute faith of this family.
Michael and Dawn take turns sleeping every day that Katie is with them. There is brief family time where all four are up in the morning to eat breakfast, but then it is time for one parent to sleep. One must be awake and holding Katie when she faces her most difficult battle.
The family is grounded in deep faith that this experience, tragic as it appears from the outside, is still a blessing. They believe this trial, crippling for most, is something they can handle. They are firmly rooted in their trust that God would not give them an insurmountable challenge. He has given them a sad and immeasurably painful one. But they are determined to survive the unsurviveable through faith.
Dawn says her faith in God has not suffered. Rather, it has been strengthened. She never expected to have this precious time with her daughter. But, she does and she thanks God for that, too. She also says that Katie has been an inspiration for many people to renew and revive their waning faith. This tiniest of newborns has given families pause to consider their priorities in life and where their children fit in. She has made families closer and a community tighter. In just nine short days, Katie’s life has already been filled with meaning and purpose, qualities that an unfortunate many fail to achieve despite whole bodies and long, unfulfilled lifetimes.
Their daughter, Lina (short for Angelina) is one of the most remarkable girls you could ever hope to meet. She exudes a maturity beyond her years and an understanding and acceptance that she has gained far too soon. When small children see her sister, and ask about Katie’s “little boo boos”, Lina is honest and direct. “No, she has big boo boos.” And, she holds her sister’s miniature hand and kisses her with compassion and love. She is strong. She is like her parents. She is like her sister.
Many people may find it hard to imagine the resilience that this family has shown. No parent should have to bury a child and few could face such a task with the same dignity and calm. But, Dawn has a sage perspective that is simple and profound. It all makes sense because of one tiny blanket.
Dawn made a pink satin blanket to swaddle her daughter. It’s soft underside is green and patterned with ladybugs. She made it with the intention of burying her daughter in it. She never imagined that this blanket would swaddle her warm, breathing, smiling, watching, grasping, fighting, beautiful baby girl for more than minutes or hours.
When Katie’s hardest battle is over, her warrior spirit and small body will be comforted and warmed for eternity in a blanket her mother made for her, that is now filled with the full energy of unexpected memories, undeterred faith, intense gratitude, the ripples of her movement, and transcendant love.
It is a sad story but with happy parts if we can only look for them by following Michael, Dawn and little Lina’s example. When the rest of us feel weak from fear, sadness and overwhelming empathy, and when we look at our own children and we weep for joy that they are whole and safe and here, we can find solace, ourselves, in that pink and green satin blanket.
It is the tiny blanket made with love, through the tears of a mother mourning her daughter before she was born, but who who felt her cherished heartbeat for so many unpromised days, that will embrace and comfort us all.
If you are interested in helping Katie’s Family through donations, services, or fund-raisers, please contact Katie’s Fighters
Via email at: email@example.com
Or Visit The Katie’s Fighter’s Facebook Page.
You can learn more about Anencephaly HERE.
All Photography Courtesy of:
By Tutu and a Bucket
Other Media Coverage of Katie’s Story: